Centre for Longitudinal Studies -1970 British Cohort Study-Mortality
University College London (UCL) · Academic
In term In term in the September 2026 edition: the latest version runs to 27 March 2027.
- Reference
- DARS-NIC-17218-B0W9X
- Current version
- v10.2
- Term of current version
- 16 March 2026 to 27 March 2027
- Start date
- Before 1 June 2018
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- Yes
- Files released to date
- 20
Why the data was released
Objective for processing
The Centre for Longitudinal Studies (CLS) at University College London (UCL) requires access to NHS England data to support the following research programme:
1970 British Cohort Study (BCS70)
The 1970 British Cohort Study (BCS70) originated in the late 1960s, when there was a great deal of concern amongst doctors and others about the number of babies born with abnormalities, or dying very early in life. It was decided to compare those mothers and babies who had problems, with those who did not in order to see what could be done about this issue. The simplest way to do this was to study all the babies born in one week. With the help of doctors, midwives, and health authorities throughout England, Wales and Scotland, this study was carried out in 1970.
Information was collected on the family background of the mother, the pregnancy and labour, and about the baby at birth and in the first week of the baby’s life. Almost 17,500 babies were studied.
It was not for another 5 years that it was decided that it would be worthwhile trying to find the families from the original birth survey to see what had happened to the babies since 1970 – how healthy they were, how they were getting on at school, and so on. This second survey was carried out in 1975. Since then there have been seven other major surveys, attempting to trace all those born in the week of the original 1970 survey – in 1980, 1986, 1996, 1999/2000, 2004/5, 2008 2012, 2016. The Age 50 survey commenced in January 2020 where it was paused due to the impact of the COVID-19 pandemic but re-commenced in early 2021. Subsequent sweeps* of the study will likely take place every five years.
CLS have access to NHS England data for the purpose of updating participant contact details and mortality information held on CLS systems and for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study.
Identifiable Civil Registration Mortality and Demographics are requested in support of the following aims:
• Update participant's details on the CLS database with a view to 1) preventing seeking contact with those who have died and potentially causing distress to friends and relatives, and 2) preventing study resources from being wasted trying to contact individuals who have since emigrated outside of the UK.
• Understand the Mortality outcomes of the BCS70 cohort and investigate how individual behaviours and social or economic determinations of health behaviours such as drug and alcohol use, sexual health, diet and exercise may have influenced outcomes.
• Support further research within the CLS
• Support further research outside the CLS via sub licencing arrangements
The CLS has previously received data for the purposes of updating the study’s database to prevent contact with those who have died or emigrated only. The CLS now requests to use this data for research purposes, and to sublicence this data via the UKDS.
The requested data will be minimised as follows:
• Data is limited to the 15,976 individuals included in the 1970 British Cohort Study (BSC70).
Where data is being shared within the CLS, or is being shared outside the CLS to support further research the data will be minimised on a project by project basis, this minimisation will be evaluated by the CLS Data Access Committee (DAC). The date of death will be de-identified as month and year, cause of death (ICD-10 codes) may be de-identified by truncation where needed.
UCL is the data controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.
The lawful basis for processing personal data under the UK GDPR is Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under UK GDPR is Article 9(2)(j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes. CLS sought permission from the Confidentiality Advisory Group and obtained S251 approval to trace participants and to use their mortality data for research.
The funding is provided by the Economic and Social Research Council.
The University of Essex is a processor acting under the instructions of UCL. The University of Essex hosts the UKDS, their role is limited to storing the linked pseudonymised data and facilitating access to third-party researchers who have the necessary approvals and contractual measures in place required to access the data.
Only substantive employees whose role supports the provision of the UKDS as a service are permitted to process the data. Should any researchers from the University of Essex wish to use the data deposited within the UKDS for research purposes they will be required to apply for access as per the process described in the ‘Sublicensing’ section below.
Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure backup of data stored in UCL’s Data Safe Haven.
UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.
****Sharing Data Within the CLS****
CLS researchers may request access to the pseudonymised mortality dataset disseminated under this Agreement for research purposes.
CLS researchers requesting access to the data must submit a CLS Data Access Application Form. The form requires that they provide general information about the project including its title, aims and data required. Applicants are required to demonstrate how the project provides a measurable benefit in the provision of health and social care in England.
Should the request be approved the following restrictions apply:
Access will be restricted to CLS researchers who meet the following requirements:
i. The researcher must be substantively employed in the CLS by UCL;
ii. The researcher must be registered with the UKDS;
iii. The researcher must have completed NHS England’s Data Security Awareness course;
iv. The researcher must have submitted a project proposal for review by the CLS Data Access Committee (DAC) and the CLS DAC must have approved the access request;
v. Once, approved, the researcher will sign a licence agreement with CLS and will then be granted access to the relevant subset of data via the UCL Data Safe Haven (DSH)
Current proposed projects intend to:
- Document and monitor socio-economic, demographic and other inequalities in cause-specific mortality over time
- Understand the joint progress of morbidity and mortality and to what extend healthy life expectancy keeps pace.
- Investigate the links between mental health and cause specific mortality
- Investigate the links between early life circumstances, childhood characteristics and cause specific mortality.
**** Sharing Data via the UKDS – Sublicensing ****
Non-CLS researchers may request access to a pseudonymised subset of the mortality data disseminated under this Agreement for research purposes. All access is via the UK Data Service (UKDS).
The process of accessing data, and the licence type under which data is accessed varies depending on the disclosivity of the data, the sensitivity of the data and the potential consequences of the misuse of data. Research data have been classified into ‘Tiers’ depending on how disclosive, sensitive and risky individual data items are. Full details of how the CLS classify data can be found in the ‘CLS Data Classification Policy’
https://cls.ucl.ac.uk/wp-content/uploads/2017/02/CLS_Data_Classification_Policy-1.pdf
** UKDS Special safeguarded data (Tier 1b)**
Special safeguarded data (Tier 1b) have a medium level of potential disclosure risk and/or sensitivity. Examples of mortality fields that fall within tier 1b include the fact of death and the month and year of death (mm/yyyy).
Tier 1b data is accessed via a UKDS Special Licence. A UKDS Special Licence may be granted to successful applicants based within the UK.
The process for access to Tier 1b data is as follows:
1. The researcher registers with the UKDS and signs the UKDS End User Licence Agreement.
2. Applicant submits and signs the UKDS Special Licence application form.
3. By signing the Special Licence application form the researcher agrees with the terms in the UKDS Research Data Handling and Security Guide for Users (https://ukdataservice.ac.uk/app/uploads/cd171-researchdatahandling.pdf)
4. The UKDS Data Access team screens the application to ensure it is properly completed.
5. The UKDS Data Access team sends the application form to CLS for approval by the Data Access Committee (CLS DAC). The CLS DAC have delegated to the CLS Research Data Management (RDM)* team the capability to evaluate and approve Special Licence data access requests. However, the RDM will seek advice and guidance from the Committee where novel issues arise.
6. A member of the CLS RDM team will assess the application on behalf of the CLS DAC and decide to approve it or request further information. The assessment is done against the CLS DAC assessment criteria set out in the CLS DAC Terms of Reference (https://cls.ucl.ac.uk/wp-content/uploads/2023/03/CLS_DAC_Terms_of_Reference.pdf). Should an application be rejected, a researcher can apply again with a revised application.
7. The CLS RDM team will inform UKDS that the project has been approved.
8. Special Licence-approved applications are reported at the next CLS DAC.
9. UKDS will inform the researcher that their project was approved and make the data available to them.
10. The researcher downloads the Special Licence data into their institutional server. Researchers must abide by the conditions laid out in the UKDS ‘Research Data Handling and Security Guide for Users’, which includes details of the individual and institutional penalties that are enforceable in the event of a breach of the conditions. They can only merge these data with CLS highly de-identified non-disclosive research data, which are also subject to UKDS Data Sharing Agreement terms and conditions.
*RDM follow the DAC Terms of Reference i.e. they are reviewing against the same criteria
**UKDS Controlled data (Tier 2)**
Controlled data (Tier 2) have a high level of potential disclosure risk (for example exact dates, detailed geographical indicators) and/or high sensitivity. Examples of mortality fields that fall within tier 2 include date of death (dd/mm/yyyy) and cause of death including clinical codes for the cause of death.
Tier 2 data is accessed via the UKDS SecureLab, which is the UKDS’ Trusted Research Environment (TRE). The UKDS SecureLab supports UK-based research projects only.
The process for access to Tier 2 data is as follows:
i. The researcher submits an application, including the UKDS 'Accredited Researcher application form', the 'Research proposal' and the “UCL Licence Agreement” to the UKDS.
ii. The UKDS Data Access team screens the application to ensure it is properly completed. Once it is, they forward the application to the CLS.
iii. The CLS Research Data Management (RDM) managers check the Organisational Information Governance and security assurance evidence provided in the “UCL Licence Agreement” and either requests further evidence to support the request or submits the application for CLS DAC approval.
iv. The CLS DAC assesses both project documents (UKDS project proposal and the “UCL Licence Agreement”) and decides whether to approve it, not approve it, or they require further information. CLS DAC considerations include an assessment of the expected benefits to health care, adult social care or the promotion of health. Should an application be rejected, a researcher can apply again with a revised application.
v. If the CLS DAC approves the project:
a. CLS RDM team informs UKDS that the project has been approved.
b. The CLS authorised representative signs the “UCL License agreement” and sends it back to the UKDS to be forwarded to the researcher.
vi. UKDS informs the researcher that their project was approved; sends them a countersigned copy of the “UCL Licence Agreement”
vii. UKDS makes the data available to the researcher via theUKDS SecureLab account via Multi Factor Authentication. ,
viii. The data will be provided to the researcher via their own UKDS SecureLab project folder, which will contain only the data that the researcher needs to see for their project. The research-linked data provided to researchers are pseudonymised and de-identified, and will never contain identifiable information such as name, address, date of birth, NHS or NI number.
ix. The researcher accessing the data via the UKDS SecureLab will not be able to download any data into their own institutional server. Once the researcher has finished their research, the UKDS will delete the data folder with the tailored dataset for the specific project.
x. Strict disclosure control checks are carried out by the UKDS before any research outputs, e.g. publication, can be extracted from the UKDS SecureLab account.
xi. CLS DAC will publish the information about any data dissemination on the CLS website, including the name of the organisation to which data was provided, purpose (summary of the project) and what data was released. (NB: If CLS DAC does not approve the project, no data will be disseminated). https://cls.ucl.ac.uk/data-access-training/data-access/
Processing activities
** Data linkage **
The CLS will supply NHS England with a file of around 15,976 study members to match to NHS data.
The file supplied will contain all cohort members who have ever participated in the study (excluding those who have requested the study to stop using their data).
Participants can;
a) withdraw from a specific data collection sweep of the study (in which case they would still be invited to take part in future sweeps of the study)
b) permanently withdraw from the study (in which case they will not be invited to take part in any future sweeps of the study) or
c) permanently withdraw from the study AND request that the data can no longer be used.
The file will contain the following items:
-CLS ID
-First name
-Last name
-Middle name (where available)
-Sex
-Date of birth
-Postcode
-NHS number (where available)
Following data linkage, NHS England will supply the following details to CLS:
- CLS identifier
- NHS Number
- Forename of the deceased
- Latest middle name (where available),
-Surname of the deceased
- Date of birth
-Date of death
-Fact of death
-Cause of death
- Gender
- Town of birth
-Address
- Date of address registration or update
-Other variables as chosen in the Civil Registration and Demographic dataset.
UCL may transfer copies of variables received from NHS England to Digital Health and Care Wales (DHCW) to process on behalf of University of Bristol for the purposes of obtaining linked data from NHS England which will be available to University of Swansea and other authorised parties through the UK Longitudinal Linkage Collaboration (UK LLC). The specific variables which UCL may share with DHCW are:
- NHS Number
- Date Of Birth
- Gender
- Postcode
As controller, UCL must ensure there are documented instructions setting out the specific details of the processing that DHCW will undertake its behalf. This must include arrangements for permanent deletion of the data and confirmation of such at the appropriate times.
At CLS, the identifiable data received under this agreement will be used to validate the information of the cohort on CLS's cohort maintenance database (meaning names and addresses are used to ensure the correct cohort member has passed away or emigrated). These identifiable data will not be made available to researchers.
The pseudonymised mortality data will be linked to the pseudonymised survey data and therefore will be linked to the survey data for research by the CLS Research Data Management team.
Researchers applying to use the survey linked to mortality data may also apply to use the linked data in combination with other datasets including Hospital Episode Statistics (HES) held by the study under DARS-NIC-49826-T0J7C.
***Access by the study operational teams and the wider CLS***
All data being accessed by the study team and the wider CLS is stored on the UCL Data Safe Haven (DSH).
Amazon Web Services provides cloud hosting services to UCL and will store the data as contracted by UCL.
UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.
Access to the UCL DHS is via remote access. For remote access:
- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;
- Access controls granting users the minimum level of access required are in place;
- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;
- Multifactor authentication (MFA) is required for remote access;
- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;
- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.
Remote processing will be from secure locations within the UK. The data will not leave the UK at any time.
Access to data held on the UCL DSH is restricted to the direct study team, and other individuals employed by UCL in the CLS who have received approval from the CLS DAC to access the data.
***Access by Sublicensees***
Access to data via sublicence depends on the tier the data falls under.
** UKDS Special safeguarded data (Tier 1b)**
The data will be stored on servers at the UK Data Archive based at the University of Essex. The UK Data Archive will store the pseudonymised analysis file only.
Subject to approval by the CLS DAC and obtaining a UKDS Special Licence, researchers receive data and work on their institutional servers.
Access is restricted to researchers who have received authorisation from CLS DAC and have obtained a UKDS Special Licence for their specific project.
This data dissemination includes the following safeguards:
i. Data transfers are made securely e.g. encrypted.
ii. The data will be used for database update and statistical research purposes and will not involve any direct decision-making about the health or treatment of a participant
iii. Data are stored in secure environments certified to ISO 27001 and/or a ‘Standards Met’ DSP Toolkit. (this is true about the data we receive from you).
iv. Data are only accessed in pseudonymised form and treated for disclosure if necessary.
v. Data will not be shared outside of the UK at any time.
** UKDS Controlled data (Tier 2)**
The data will be stored on servers at the UK Data Archive based at the University of Essex. The UK Data Archive will store the pseudonymised analysis file only.
Subject to approval by the CLS, the UKDS will make data available to researchers via the UKDS Secure Lab.
The Data will be accessed via remote access. For remote access:
- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;
- Access controls granting users the minimum level of access required are in place;
- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;
- Multifactor authentication (MFA) is required for remote access;
- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;
- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.
Remote processing will be from secure locations within the UK. The data will not leave the UK at any time.
Access is restricted to researchers who have received authorisation from CLS DAC for their specific project.
All personnel accessing the data have been appropriately trained in data protection and confidentiality.
This data dissemination includes the following safeguards:
i. Linkages are covered by the Section 251 support (use of mortality data for research projects)
ii. Identifying variables are held separately from the survey responses, including during the matching process.
iii. Data transfers are made securely e.g. encrypted.
iv. The data will only be used for database update and statistical research purposes and will not involve any direct decision-making about the health or treatment of a participant
v. Data are stored in secure environments certified to ISO 27001 and/or a ‘Standards Met’ DSP Toolkit.
vi. Data are only accessed in pseudonymised form and treated for disclosure if necessary.
vii. Data are accessed via the receiving organisation's secure environment.
viii. Disclosure control checks are carried out before any research publication.
Data will not be shared outside of the UK at any time.
Expected output
The main outcome from the BCS70 Age 51 survey is the fully documented, anonymised research dataset now archived with the UK Data Service. More information available via the CLS website
https://cls.ucl.ac.uk/cls-studies/1970-british-cohort-study/bcs70-age-51-sweep/
The survey includes a core interview and a paper self-completion questionnaire which will cover the following topics:
-Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.
-Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
-Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
-Social capital, social and political participation, attitudes and values, and religion. In addition, participants were asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Outputs for the mortality data:
database update-The notifications of deaths and embarkations will ensure CLS doesn't waste resources sending invitations to those who have moved away. It will also prevent CLS from contacting those who have died.
Research- The pseudonymised data which will be used for research. Below is a list with some of the research that CLS intends to do using mortality data for research.
1. Document and monitor socio-economic, demographic and other inequalities in cause-specific mortality over time/across generations.
2. Understand the joint progress of morbidity and mortality and to what extent healthy life expectancy keeps pace with total life expectancy.
3. Investigate the links between mental health and cause specific mortality.
4. Investigate the links between early life circumstances, childhood characteristics/behaviour and cause-specific mortality
This dataset provides a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
Expected measurable benefits
The information collected during the Age 46, 51 Survey and in the future sweeps age 54 onwards will enable researchers to uncover life course and inter-generational factors which contribute to healthy ageing among this generation, and thus to inform the development of preventative health policies across the whole of life that will expand healthy life expectancy, and reduce the burden of ill-health and disease at older ages.
The use of the data will result in papers that will be published, presented at conferences and sometimes reach media coverage. Most papers will contribute to a body of evidence which will result in improvements to health care users experience or health care delivery. It is expected that occasionally, these may have a higher impact such as the examples highlighted below:
For example the Welsh Government policy on early years planning - http://www.closer.ac.uk/news-opinion/2013/welsh-governments-early-years-childcare-plan-draws-evidence/ The continuing success of the study will be underpinned by the successful matching of untraced cases.
Encouraging reading for pleasure and children’s cognitive development. Research using data from the 1970 British Cohort Study (BCS70) has revealed how reading for pleasure can help children excel not only in English but also in maths. This important work, led by CLS, has had a big influence on reading for pleasure programmes, policies and practice in the UK and beyond, benefitting millions of children worldwide. The link between reading for pleasure and children’s maths and vocabulary scores was covered extensively in the media, including in articles in the Daily Telegraph, Sydney Morning Herald and Vancouver Sun and in interviews for BBC Radio 4’s Today Programme, BBC London and Al Jazeera. The findings attracted a remarkable amount of interest from schools, libraries and literacy organisations around the world. They have been used to help protect library services, to persuade children of all ages to spend more time reading, and to encourage parents to support schools’ home reading initiatives. In the UK, the research was cited in a 2015 Department for Education report, ‘Reading: the next steps’, underpinning recommendations for government funding to support book clubs, resources for reading, and instructing schools to promote library membership. Selected coverage:
The Guardian – ‘Reading for fun improves children’s brains, study confirms’
Daily Telegraph – ‘Reading for pleasure ‘boosts pupils’ results in maths’
Vancouver Sun – ‘ Libraries are worthwhile public investment’
Sydney Morning Herald – ‘Reading gives kids an edge, study says’
On average, eighty research papers are written every year using the BCS70 dataset, many of these papers are in the area of health or social care and contribute to advance further knowledge in health.
The specific benefits to society, using the data accessed through the sub-license, would be stated by each applicant as part of their application (as required in the Accredited research form and Research proposal )e.g. 'How your findings is expected to benefit society?' How does the project provide a public benefit'? 'Contribution towards
public policy or journal publications 'CLS is expected to further require the applicant to describe the benefits of
their intended research to health and social care.
Submitting the cohort for list cleaning and being able to keep the information for future sweeps, will allow the researchers to recontact the participants who CLS have lost touch with and give them the opportunity to re-engage or clearly state that they wish to withdraw. It will also ensure that literature goes to the correct name and address. It will also ensure that no contact will be made with participants who have died.
Benefits reported so far
The Age 46 and 51 survey data are now deposited at the UK Data Arc
The CLS have already achieved demonstrable benefits using research and other data including adding outputs to the existing body of evidence that influences research and decision making. These demonstrable benefits have been listed in the above section and include the following:
- adding to the existing body of evidence supporting various scientific publications;
- research evidence used for government briefing papers;
- attracting media coverage to the wider issues surrounding the research.
The latest research using BCS70 data can be found here: https://cls.ucl.ac.uk/cls-studies/1970-british-cohort-study/bcs70-age-51-sweep/
https://cls.ucl.ac.uk/briefings_impact/?sortby=REL&s=bcs70&cls_global_study=&cls_theme_type=&content_type=html_publication%2Cbriefings_impact#search-form
Datasets on the current version
Legal basis for provision: Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'.
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Civil Registrations of Death | Identifiable | Sensitive | One-Off | Section 251 NHS Act 2006 |
| Demographics | Identifiable | Sensitive | One-Off | Section 251 NHS Act 2006 |
| MRIS - Cause of Death Report | Identifiable | Sensitive | Ongoing | Section 251 NHS Act 2006 |
| MRIS - Cohort Event Notification Report | Identifiable | Sensitive | Ongoing | Section 251 NHS Act 2006 |
| MRIS - Flagging Current Status Report | Identifiable | Sensitive | One-Off | Section 251 NHS Act 2006 |
| MRIS - List Cleaning Report | Identifiable | Sensitive | One-Off | Section 251 NHS Act 2006 |
| MRIS - Members and Postings Report | Identifiable | Sensitive | One-Off | Section 251 NHS Act 2006 |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
This agreement permits sublicensing: the applicant may pass data on to others. Anything passed on is not recorded in this register.
Patient opt-outs were applied to all 20 files released under this agreement, across every version. About opt-outs
Files released against version 10.2 of this agreement, summarised by dataset.
| Dataset | Files | First released | Last released | Opt-outs applied |
|---|---|---|---|---|
| Civil Registrations of Death | 1 | June 2026 | June 2026 | Yes |
| Demographics | 1 | June 2026 | June 2026 | Yes |
Version history
The register lists each renewal of this agreement as a separate row. This site has 9 versions — earlier versions existed before this site's records begin.
DARS-NIC-17218-B0W9X-v10.2 16 March 2026 to 27 March 2027
- Title
- Centre for Longitudinal Studies -1970 British Cohort Study-Mortality
- Commercial
- No
- Sublicensing
- Yes
- Datasets
- 7
- Files released
- 2
Datasets: Civil Registrations of Death; Demographics; MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - List Cleaning Report; MRIS - Members and Postings Report
What changed from DARS-NIC-17218-B0W9X-v9.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2026-03-16 | |
| End date | 2027-03-27 |
Objective for processing
[32 paragraphs unchanged]
v. Once, approved, the researcher will sign a licence agreement with CLS
[6 words unchanged]
to the relevant subset of data via the UCL Data Safe Haven
(DSH
(DSH)
[5 paragraphs unchanged]
****Sharing
**** Sharing
Data via the UKDS – Sublicensing ****
[35 paragraphs unchanged]
Processing activities
[31 paragraphs unchanged]
The identifiable data received under this agreement will be used to validate the information of the cohort on CLS's cohort maintenance database (meaning names and addresses are used to ensure the correct cohort member has passed away or emigrated). These identifiable data will not be linked to any other data, and it will not be made available to researchers.
UCL may transfer copies of variables received from NHS England to Digital Health and Care Wales (DHCW) to process on behalf of University of Bristol for the purposes of obtaining linked data from NHS England which will be available to University of Swansea and other authorised parties through the UK Longitudinal Linkage Collaboration (UK LLC). The specific variables which UCL may share with DHCW are:
- NHS Number
- Date Of Birth
- Gender
- Postcode
As controller, UCL must ensure there are documented instructions setting out the specific details of the processing that DHCW will undertake its behalf. This must include arrangements for permanent deletion of the data and confirmation of such at the appropriate times.
At CLS, the identifiable data received under this agreement will be used to validate the information of the cohort on CLS's cohort maintenance database (meaning names and addresses are used to ensure the correct cohort member has passed away or emigrated). These identifiable data will not be made available to researchers.
[27 paragraphs unchanged]
** UKDS Controlled data (Tier 2)**
**
[22 paragraphs unchanged]
Expected output
The main outcome from the BCS70 Age 50 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
The main outcome from the BCS70 Age 51 survey is the fully documented, anonymised research dataset now archived with the UK Data Service. More information available via the CLS website
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
https://cls.ucl.ac.uk/cls-studies/1970-british-cohort-study/bcs70-age-51-sweep/
The survey includes a core interview and a paper self-completion questionnaire which will cover the following topics:
[3 paragraphs unchanged]
-Social capital, social and political participation, attitudes and values, and religion.
-Social capital, social and political participation, attitudes and values, and religion. In addition, participants were asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Participants will also be asked to complete an online dietary questionnaire. As mentioned above this rich dataset will be shared with the wider research community for research.
[7 paragraphs unchanged]
This dataset provides a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
Expected measurable benefits
The information collected during the Age
46
46, 51
Survey and in the future sweeps age
50 and
54
onwards
will enable researchers to uncover life course and inter-generational factors which contribute
[26 words unchanged]
expectancy, and reduce the burden of ill-health and disease at older ages.
[12 paragraphs unchanged]
Benefits reported
The Age 46
and 51
survey data
is
are
now deposited at the UK Data
Archive for researchers to use.
Arc
This was a main output in the previous versions of this DSA. The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
A full list of the data collection elements is provided below:
45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
Blood pressure measurement
Grip strength assessment
Balance assessment
Blood sample collection
Activity monitor
Online dietary diary
[4 paragraphs unchanged]
The latest research using BCS70 data can be found here: https://cls.ucl.ac.uk/cls-studies/1970-british-cohort-study/bcs70-age-51-sweep/
https://cls.ucl.ac.uk/briefings_impact/?sortby=REL&s=bcs70&cls_global_study=&cls_theme_type=&content_type=html_publication%2Cbriefings_impact#search-form
DARS-NIC-17218-B0W9X-v9.2 28 March 2025 to 27 March 2026
- Title
- Centre for Longitudinal Studies -1970 British Cohort Study-Mortality
- Commercial
- No
- Sublicensing
- Yes
- Datasets
- 7
- Files released
- 2
Datasets: Civil Registrations of Death; Demographics; MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - List Cleaning Report; MRIS - Members and Postings Report
What changed from DARS-NIC-17218-B0W9X-v8.3
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Title | Centre for Longitudinal Studies -1970 British Cohort Study-Mortality | |
| Start date | 2025-03-28 | |
| End date | 2026-03-27 | |
| Sublicensing | Yes |
Objective for processing
The following gives an overview of the study and purposes from historic disseminations.
The Centre for Longitudinal Studies (CLS) at University College London (UCL) requires access to NHS England data to support the following research programme:
The Centre for Longitudinal Studies (CLS) at University College London (UCL) requires access to NHS England data for the purpose of the 1970 British Cohort Study (BCS70).
1970 British Cohort Study (BCS70)
[4 paragraphs unchanged]
CLS have previously received record level, identifiable data linked to the cohort from the following datasets.
Identifiable Civil Registration Mortality and Demographics are requested in support of the following aims:
- MRIS – Cause of Death Report
• Update participant's details on the CLS database with a view to 1) preventing seeking contact with those who have died and potentially causing distress to friends and relatives, and 2) preventing study resources from being wasted trying to contact individuals who have since emigrated outside of the UK.
- MRIS - List Cleaning Report
• Understand the Mortality outcomes of the BCS70 cohort and investigate how individual behaviours and social or economic determinations of health behaviours such as drug and alcohol use, sexual health, diet and exercise may have influenced outcomes.
- MRIS - Members and Postings Report
• Support further research within the CLS
- MRIS – Cohort Event Notification Report
• Support further research outside the CLS via sub licencing arrangements
- MRIS – Flagging Current Status Report
The CLS has previously received data for the purposes of updating the study’s database to prevent contact with those who have died or emigrated only. The CLS now requests to use this data for research purposes, and to sublicence this data via the UKDS.
-
The requested data will be minimised as follows:
MRIS reports were disbanded in 2020 and CLS received the replacement data sets;
• Data is limited to the 15,976 individuals included in the 1970 British Cohort Study (BSC70).
-Demographics (CLS now receive Demographics data via DARS-NIC-129836-D5F3W)
Where data is being shared within the CLS, or is being shared outside the CLS to support further research the data will be minimised on a project by project basis, this minimisation will be evaluated by the CLS Data Access Committee (DAC). The date of death will be de-identified as month and year, cause of death (ICD-10 codes) may be de-identified by truncation where needed.
- Civil Registrations of Deaths
UCL is the data controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.
[1 paragraph unchanged]
The lawful basis for processing special category data under UK GDPR is
[8 words unchanged]
in the public interest, scientific or historical research purposes or statistical purposes.
In addition, for ethical reasons and under the Common Law Duty of Confidentiality, UCL
CLS
sought permission from
cohort members
the Confidentiality Advisory Group and obtained S251 approval
to
access and link their routine health records to their survey data,
trace participants
and to
the onward sharing of this linked
use their mortality
data
in pseudonymised form (via a secure setting with appropriate safeguards).
for research.
The Economic and Social Research Council (ESRC) are the funder for this study. The funder will have no ability to suppress or otherwise limit the publication of findings.
The funding is provided by the Economic and Social Research Council.
The University of Essex is a processor acting under the instructions of UCL. The University of Essex hosts the UKDS, their role is limited to storing the linked pseudonymised data and facilitating access to third-party researchers who have the necessary approvals and contractual measures in place required to access the data.
Only substantive employees whose role supports the provision of the UKDS as a service are permitted to process the data. Should any researchers from the University of Essex wish to use the data deposited within the UKDS for research purposes they will be required to apply for access as per the process described in the ‘Sublicensing’ section below.
[2 paragraphs unchanged]
****Sharing Data Within the CLS****
CLS researchers may request access to the pseudonymised mortality dataset disseminated under this Agreement for research purposes.
CLS researchers requesting access to the data must submit a CLS Data Access Application Form. The form requires that they provide general information about the project including its title, aims and data required. Applicants are required to demonstrate how the project provides a measurable benefit in the provision of health and social care in England.
Should the request be approved the following restrictions apply:
Access will be restricted to CLS researchers who meet the following requirements:
i. The researcher must be substantively employed in the CLS by UCL;
ii. The researcher must be registered with the UKDS;
iii. The researcher must have completed NHS England’s Data Security Awareness course;
iv. The researcher must have submitted a project proposal for review by the CLS Data Access Committee (DAC) and the CLS DAC must have approved the access request;
v. Once, approved, the researcher will sign a licence agreement with CLS and will then be granted access to the relevant subset of data via the UCL Data Safe Haven (DSH
Current proposed projects intend to:
- Document and monitor socio-economic, demographic and other inequalities in cause-specific mortality over time
- Understand the joint progress of morbidity and mortality and to what extend healthy life expectancy keeps pace.
- Investigate the links between mental health and cause specific mortality
- Investigate the links between early life circumstances, childhood characteristics and cause specific mortality.
****Sharing Data via the UKDS – Sublicensing ****
Non-CLS researchers may request access to a pseudonymised subset of the mortality data disseminated under this Agreement for research purposes. All access is via the UK Data Service (UKDS).
The process of accessing data, and the licence type under which data is accessed varies depending on the disclosivity of the data, the sensitivity of the data and the potential consequences of the misuse of data. Research data have been classified into ‘Tiers’ depending on how disclosive, sensitive and risky individual data items are. Full details of how the CLS classify data can be found in the ‘CLS Data Classification Policy’
https://cls.ucl.ac.uk/wp-content/uploads/2017/02/CLS_Data_Classification_Policy-1.pdf
** UKDS Special safeguarded data (Tier 1b)**
Special safeguarded data (Tier 1b) have a medium level of potential disclosure risk and/or sensitivity. Examples of mortality fields that fall within tier 1b include the fact of death and the month and year of death (mm/yyyy).
Tier 1b data is accessed via a UKDS Special Licence. A UKDS Special Licence may be granted to successful applicants based within the UK.
The process for access to Tier 1b data is as follows:
1. The researcher registers with the UKDS and signs the UKDS End User Licence Agreement.
2. Applicant submits and signs the UKDS Special Licence application form.
3. By signing the Special Licence application form the researcher agrees with the terms in the UKDS Research Data Handling and Security Guide for Users (https://ukdataservice.ac.uk/app/uploads/cd171-researchdatahandling.pdf)
4. The UKDS Data Access team screens the application to ensure it is properly completed.
5. The UKDS Data Access team sends the application form to CLS for approval by the Data Access Committee (CLS DAC). The CLS DAC have delegated to the CLS Research Data Management (RDM)* team the capability to evaluate and approve Special Licence data access requests. However, the RDM will seek advice and guidance from the Committee where novel issues arise.
6. A member of the CLS RDM team will assess the application on behalf of the CLS DAC and decide to approve it or request further information. The assessment is done against the CLS DAC assessment criteria set out in the CLS DAC Terms of Reference (https://cls.ucl.ac.uk/wp-content/uploads/2023/03/CLS_DAC_Terms_of_Reference.pdf). Should an application be rejected, a researcher can apply again with a revised application.
7. The CLS RDM team will inform UKDS that the project has been approved.
8. Special Licence-approved applications are reported at the next CLS DAC.
9. UKDS will inform the researcher that their project was approved and make the data available to them.
10. The researcher downloads the Special Licence data into their institutional server. Researchers must abide by the conditions laid out in the UKDS ‘Research Data Handling and Security Guide for Users’, which includes details of the individual and institutional penalties that are enforceable in the event of a breach of the conditions. They can only merge these data with CLS highly de-identified non-disclosive research data, which are also subject to UKDS Data Sharing Agreement terms and conditions.
*RDM follow the DAC Terms of Reference i.e. they are reviewing against the same criteria
**UKDS Controlled data (Tier 2)**
Controlled data (Tier 2) have a high level of potential disclosure risk (for example exact dates, detailed geographical indicators) and/or high sensitivity. Examples of mortality fields that fall within tier 2 include date of death (dd/mm/yyyy) and cause of death including clinical codes for the cause of death.
Tier 2 data is accessed via the UKDS SecureLab, which is the UKDS’ Trusted Research Environment (TRE). The UKDS SecureLab supports UK-based research projects only.
The process for access to Tier 2 data is as follows:
i. The researcher submits an application, including the UKDS 'Accredited Researcher application form', the 'Research proposal' and the “UCL Licence Agreement” to the UKDS.
ii. The UKDS Data Access team screens the application to ensure it is properly completed. Once it is, they forward the application to the CLS.
iii. The CLS Research Data Management (RDM) managers check the Organisational Information Governance and security assurance evidence provided in the “UCL Licence Agreement” and either requests further evidence to support the request or submits the application for CLS DAC approval.
iv. The CLS DAC assesses both project documents (UKDS project proposal and the “UCL Licence Agreement”) and decides whether to approve it, not approve it, or they require further information. CLS DAC considerations include an assessment of the expected benefits to health care, adult social care or the promotion of health. Should an application be rejected, a researcher can apply again with a revised application.
v. If the CLS DAC approves the project:
a. CLS RDM team informs UKDS that the project has been approved.
b. The CLS authorised representative signs the “UCL License agreement” and sends it back to the UKDS to be forwarded to the researcher.
vi. UKDS informs the researcher that their project was approved; sends them a countersigned copy of the “UCL Licence Agreement”
vii. UKDS makes the data available to the researcher via theUKDS SecureLab account via Multi Factor Authentication. ,
viii. The data will be provided to the researcher via their own UKDS SecureLab project folder, which will contain only the data that the researcher needs to see for their project. The research-linked data provided to researchers are pseudonymised and de-identified, and will never contain identifiable information such as name, address, date of birth, NHS or NI number.
ix. The researcher accessing the data via the UKDS SecureLab will not be able to download any data into their own institutional server. Once the researcher has finished their research, the UKDS will delete the data folder with the tailored dataset for the specific project.
x. Strict disclosure control checks are carried out by the UKDS before any research outputs, e.g. publication, can be extracted from the UKDS SecureLab account.
xi. CLS DAC will publish the information about any data dissemination on the CLS website, including the name of the organisation to which data was provided, purpose (summary of the project) and what data was released. (NB: If CLS DAC does not approve the project, no data will be disseminated). https://cls.ucl.ac.uk/data-access-training/data-access/
Processing activities
Under previous versions of this DSA CLS transferred data to NHS England. The data consisted of identifying details specifically NHS number, Date of Birth (DOB), first name, Last Name, Middle name, Gender, Postcode and study ID for the cohort to be linked with NHS England data.
** Data linkage **
NHS England provided the relevant records from the Demographics and Civil Registrations of Deaths dataset to CLS. The data contained contain directly identifying data items such as Address’, postcodes, NHS Number, DOB, Gender, Fact of Death
The CLS will supply NHS England with a file of around 15,976 study members to match to NHS data.
The data is stored on servers at UCL.
The file supplied will contain all cohort members who have ever participated in the study (excluding those who have requested the study to stop using their data).
The data can be accessed by authorised CLS personnel via remote access on UCL-issued devices from their work organisation office or from home. The data will always remain on the servers at UCL CLS. Personnel are prohibited from downloading or copying data to local devices.
Participants can;
Personnel are prohibited from downloading or copying data to local devices
a) withdraw from a specific data collection sweep of the study (in which case they would still be invited to take part in future sweeps of the study)
The data will not leave the UK.
b) permanently withdraw from the study (in which case they will not be invited to take part in any future sweeps of the study) or
Access is restricted to employees of UCL who have authorisation from the principal investigator of the BCS70 study.
c) permanently withdraw from the study AND request that the data can no longer be used.
All personnel accessing the data have been appropriately trained in data protection and confidentiality
The file will contain the following items:
-CLS ID
-First name
-Last name
-Middle name (where available)
-Sex
-Date of birth
-Postcode
-NHS number (where available)
Following data linkage, NHS England will supply the following details to CLS:
- CLS identifier
- NHS Number
- Forename of the deceased
- Latest middle name (where available),
-Surname of the deceased
- Date of birth
-Date of death
-Fact of death
-Cause of death
- Gender
- Town of birth
-Address
- Date of address registration or update
-Other variables as chosen in the Civil Registration and Demographic dataset.
The identifiable data received under this agreement will be used to validate the information of the cohort on CLS's cohort maintenance database (meaning names and addresses are used to ensure the correct cohort member has passed away or emigrated). These identifiable data will not be linked to any other data, and it will not be made available to researchers.
The pseudonymised mortality data will be linked to the pseudonymised survey data and therefore will be linked to the survey data for research by the CLS Research Data Management team.
Researchers applying to use the survey linked to mortality data may also apply to use the linked data in combination with other datasets including Hospital Episode Statistics (HES) held by the study under DARS-NIC-49826-T0J7C.
***Access by the study operational teams and the wider CLS***
All data being accessed by the study team and the wider CLS is stored on the UCL Data Safe Haven (DSH).
Amazon Web Services provides cloud hosting services to UCL and will store the data as contracted by UCL.
UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.
Access to the UCL DHS is via remote access. For remote access:
- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;
- Access controls granting users the minimum level of access required are in place;
- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;
- Multifactor authentication (MFA) is required for remote access;
- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;
- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.
Remote processing will be from secure locations within the UK. The data will not leave the UK at any time.
Access to data held on the UCL DSH is restricted to the direct study team, and other individuals employed by UCL in the CLS who have received approval from the CLS DAC to access the data.
***Access by Sublicensees***
Access to data via sublicence depends on the tier the data falls under.
** UKDS Special safeguarded data (Tier 1b)**
The data will be stored on servers at the UK Data Archive based at the University of Essex. The UK Data Archive will store the pseudonymised analysis file only.
Subject to approval by the CLS DAC and obtaining a UKDS Special Licence, researchers receive data and work on their institutional servers.
Access is restricted to researchers who have received authorisation from CLS DAC and have obtained a UKDS Special Licence for their specific project.
This data dissemination includes the following safeguards:
i. Data transfers are made securely e.g. encrypted.
ii. The data will be used for database update and statistical research purposes and will not involve any direct decision-making about the health or treatment of a participant
iii. Data are stored in secure environments certified to ISO 27001 and/or a ‘Standards Met’ DSP Toolkit. (this is true about the data we receive from you).
iv. Data are only accessed in pseudonymised form and treated for disclosure if necessary.
v. Data will not be shared outside of the UK at any time.
** UKDS Controlled data (Tier 2)** **
The data will be stored on servers at the UK Data Archive based at the University of Essex. The UK Data Archive will store the pseudonymised analysis file only.
Subject to approval by the CLS, the UKDS will make data available to researchers via the UKDS Secure Lab.
The Data will be accessed via remote access. For remote access:
- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;
- Access controls granting users the minimum level of access required are in place;
- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;
- Multifactor authentication (MFA) is required for remote access;
- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;
- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.
Remote processing will be from secure locations within the UK. The data will not leave the UK at any time.
Access is restricted to researchers who have received authorisation from CLS DAC for their specific project.
All personnel accessing the data have been appropriately trained in data protection and confidentiality.
This data dissemination includes the following safeguards:
i. Linkages are covered by the Section 251 support (use of mortality data for research projects)
ii. Identifying variables are held separately from the survey responses, including during the matching process.
iii. Data transfers are made securely e.g. encrypted.
iv. The data will only be used for database update and statistical research purposes and will not involve any direct decision-making about the health or treatment of a participant
v. Data are stored in secure environments certified to ISO 27001 and/or a ‘Standards Met’ DSP Toolkit.
vi. Data are only accessed in pseudonymised form and treated for disclosure if necessary.
vii. Data are accessed via the receiving organisation's secure environment.
viii. Disclosure control checks are carried out before any research publication.
Data will not be shared outside of the UK at any time.
Unchanged: Expected output, Expected measurable benefits, Benefits reported.
Objective for processing
The Centre for Longitudinal Studies (CLS) at University College London (UCL) requires access to NHS England data to support the following research programme:
1970 British Cohort Study (BCS70)
The 1970 British Cohort Study (BCS70) originated in the late 1960s, when there was a great deal of concern amongst doctors and others about the number of babies born with abnormalities, or dying very early in life. It was decided to compare those mothers and babies who had problems, with those who did not in order to see what could be done about this issue. The simplest way to do this was to study all the babies born in one week. With the help of doctors, midwives, and health authorities throughout England, Wales and Scotland, this study was carried out in 1970.
Information was collected on the family background of the mother, the pregnancy and labour, and about the baby at birth and in the first week of the baby’s life. Almost 17,500 babies were studied.
It was not for another 5 years that it was decided that it would be worthwhile trying to find the families from the original birth survey to see what had happened to the babies since 1970 – how healthy they were, how they were getting on at school, and so on. This second survey was carried out in 1975. Since then there have been seven other major surveys, attempting to trace all those born in the week of the original 1970 survey – in 1980, 1986, 1996, 1999/2000, 2004/5, 2008 2012, 2016. The Age 50 survey commenced in January 2020 where it was paused due to the impact of the COVID-19 pandemic but re-commenced in early 2021. Subsequent sweeps* of the study will likely take place every five years.
CLS have access to NHS England data for the purpose of updating participant contact details and mortality information held on CLS systems and for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study.
Identifiable Civil Registration Mortality and Demographics are requested in support of the following aims:
• Update participant's details on the CLS database with a view to 1) preventing seeking contact with those who have died and potentially causing distress to friends and relatives, and 2) preventing study resources from being wasted trying to contact individuals who have since emigrated outside of the UK.
• Understand the Mortality outcomes of the BCS70 cohort and investigate how individual behaviours and social or economic determinations of health behaviours such as drug and alcohol use, sexual health, diet and exercise may have influenced outcomes.
• Support further research within the CLS
• Support further research outside the CLS via sub licencing arrangements
The CLS has previously received data for the purposes of updating the study’s database to prevent contact with those who have died or emigrated only. The CLS now requests to use this data for research purposes, and to sublicence this data via the UKDS.
The requested data will be minimised as follows:
• Data is limited to the 15,976 individuals included in the 1970 British Cohort Study (BSC70).
Where data is being shared within the CLS, or is being shared outside the CLS to support further research the data will be minimised on a project by project basis, this minimisation will be evaluated by the CLS Data Access Committee (DAC). The date of death will be de-identified as month and year, cause of death (ICD-10 codes) may be de-identified by truncation where needed.
UCL is the data controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.
The lawful basis for processing personal data under the UK GDPR is Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under UK GDPR is Article 9(2)(j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes. CLS sought permission from the Confidentiality Advisory Group and obtained S251 approval to trace participants and to use their mortality data for research.
The funding is provided by the Economic and Social Research Council.
The University of Essex is a processor acting under the instructions of UCL. The University of Essex hosts the UKDS, their role is limited to storing the linked pseudonymised data and facilitating access to third-party researchers who have the necessary approvals and contractual measures in place required to access the data.
Only substantive employees whose role supports the provision of the UKDS as a service are permitted to process the data. Should any researchers from the University of Essex wish to use the data deposited within the UKDS for research purposes they will be required to apply for access as per the process described in the ‘Sublicensing’ section below.
Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure backup of data stored in UCL’s Data Safe Haven.
UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.
****Sharing Data Within the CLS****
CLS researchers may request access to the pseudonymised mortality dataset disseminated under this Agreement for research purposes.
CLS researchers requesting access to the data must submit a CLS Data Access Application Form. The form requires that they provide general information about the project including its title, aims and data required. Applicants are required to demonstrate how the project provides a measurable benefit in the provision of health and social care in England.
Should the request be approved the following restrictions apply:
Access will be restricted to CLS researchers who meet the following requirements:
i. The researcher must be substantively employed in the CLS by UCL;
ii. The researcher must be registered with the UKDS;
iii. The researcher must have completed NHS England’s Data Security Awareness course;
iv. The researcher must have submitted a project proposal for review by the CLS Data Access Committee (DAC) and the CLS DAC must have approved the access request;
v. Once, approved, the researcher will sign a licence agreement with CLS and will then be granted access to the relevant subset of data via the UCL Data Safe Haven (DSH
Current proposed projects intend to:
- Document and monitor socio-economic, demographic and other inequalities in cause-specific mortality over time
- Understand the joint progress of morbidity and mortality and to what extend healthy life expectancy keeps pace.
- Investigate the links between mental health and cause specific mortality
- Investigate the links between early life circumstances, childhood characteristics and cause specific mortality.
****Sharing Data via the UKDS – Sublicensing ****
Non-CLS researchers may request access to a pseudonymised subset of the mortality data disseminated under this Agreement for research purposes. All access is via the UK Data Service (UKDS).
The process of accessing data, and the licence type under which data is accessed varies depending on the disclosivity of the data, the sensitivity of the data and the potential consequences of the misuse of data. Research data have been classified into ‘Tiers’ depending on how disclosive, sensitive and risky individual data items are. Full details of how the CLS classify data can be found in the ‘CLS Data Classification Policy’
https://cls.ucl.ac.uk/wp-content/uploads/2017/02/CLS_Data_Classification_Policy-1.pdf
** UKDS Special safeguarded data (Tier 1b)**
Special safeguarded data (Tier 1b) have a medium level of potential disclosure risk and/or sensitivity. Examples of mortality fields that fall within tier 1b include the fact of death and the month and year of death (mm/yyyy).
Tier 1b data is accessed via a UKDS Special Licence. A UKDS Special Licence may be granted to successful applicants based within the UK.
The process for access to Tier 1b data is as follows:
1. The researcher registers with the UKDS and signs the UKDS End User Licence Agreement.
2. Applicant submits and signs the UKDS Special Licence application form.
3. By signing the Special Licence application form the researcher agrees with the terms in the UKDS Research Data Handling and Security Guide for Users (https://ukdataservice.ac.uk/app/uploads/cd171-researchdatahandling.pdf)
4. The UKDS Data Access team screens the application to ensure it is properly completed.
5. The UKDS Data Access team sends the application form to CLS for approval by the Data Access Committee (CLS DAC). The CLS DAC have delegated to the CLS Research Data Management (RDM)* team the capability to evaluate and approve Special Licence data access requests. However, the RDM will seek advice and guidance from the Committee where novel issues arise.
6. A member of the CLS RDM team will assess the application on behalf of the CLS DAC and decide to approve it or request further information. The assessment is done against the CLS DAC assessment criteria set out in the CLS DAC Terms of Reference (https://cls.ucl.ac.uk/wp-content/uploads/2023/03/CLS_DAC_Terms_of_Reference.pdf). Should an application be rejected, a researcher can apply again with a revised application.
7. The CLS RDM team will inform UKDS that the project has been approved.
8. Special Licence-approved applications are reported at the next CLS DAC.
9. UKDS will inform the researcher that their project was approved and make the data available to them.
10. The researcher downloads the Special Licence data into their institutional server. Researchers must abide by the conditions laid out in the UKDS ‘Research Data Handling and Security Guide for Users’, which includes details of the individual and institutional penalties that are enforceable in the event of a breach of the conditions. They can only merge these data with CLS highly de-identified non-disclosive research data, which are also subject to UKDS Data Sharing Agreement terms and conditions.
*RDM follow the DAC Terms of Reference i.e. they are reviewing against the same criteria
**UKDS Controlled data (Tier 2)**
Controlled data (Tier 2) have a high level of potential disclosure risk (for example exact dates, detailed geographical indicators) and/or high sensitivity. Examples of mortality fields that fall within tier 2 include date of death (dd/mm/yyyy) and cause of death including clinical codes for the cause of death.
Tier 2 data is accessed via the UKDS SecureLab, which is the UKDS’ Trusted Research Environment (TRE). The UKDS SecureLab supports UK-based research projects only.
The process for access to Tier 2 data is as follows:
i. The researcher submits an application, including the UKDS 'Accredited Researcher application form', the 'Research proposal' and the “UCL Licence Agreement” to the UKDS.
ii. The UKDS Data Access team screens the application to ensure it is properly completed. Once it is, they forward the application to the CLS.
iii. The CLS Research Data Management (RDM) managers check the Organisational Information Governance and security assurance evidence provided in the “UCL Licence Agreement” and either requests further evidence to support the request or submits the application for CLS DAC approval.
iv. The CLS DAC assesses both project documents (UKDS project proposal and the “UCL Licence Agreement”) and decides whether to approve it, not approve it, or they require further information. CLS DAC considerations include an assessment of the expected benefits to health care, adult social care or the promotion of health. Should an application be rejected, a researcher can apply again with a revised application.
v. If the CLS DAC approves the project:
a. CLS RDM team informs UKDS that the project has been approved.
b. The CLS authorised representative signs the “UCL License agreement” and sends it back to the UKDS to be forwarded to the researcher.
vi. UKDS informs the researcher that their project was approved; sends them a countersigned copy of the “UCL Licence Agreement”
vii. UKDS makes the data available to the researcher via theUKDS SecureLab account via Multi Factor Authentication. ,
viii. The data will be provided to the researcher via their own UKDS SecureLab project folder, which will contain only the data that the researcher needs to see for their project. The research-linked data provided to researchers are pseudonymised and de-identified, and will never contain identifiable information such as name, address, date of birth, NHS or NI number.
ix. The researcher accessing the data via the UKDS SecureLab will not be able to download any data into their own institutional server. Once the researcher has finished their research, the UKDS will delete the data folder with the tailored dataset for the specific project.
x. Strict disclosure control checks are carried out by the UKDS before any research outputs, e.g. publication, can be extracted from the UKDS SecureLab account.
xi. CLS DAC will publish the information about any data dissemination on the CLS website, including the name of the organisation to which data was provided, purpose (summary of the project) and what data was released. (NB: If CLS DAC does not approve the project, no data will be disseminated). https://cls.ucl.ac.uk/data-access-training/data-access/
Expected output
The main outcome from the BCS70 Age 50 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
-Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.
-Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
-Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
-Social capital, social and political participation, attitudes and values, and religion.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Participants will also be asked to complete an online dietary questionnaire. As mentioned above this rich dataset will be shared with the wider research community for research.
Outputs for the mortality data:
database update-The notifications of deaths and embarkations will ensure CLS doesn't waste resources sending invitations to those who have moved away. It will also prevent CLS from contacting those who have died.
Research- The pseudonymised data which will be used for research. Below is a list with some of the research that CLS intends to do using mortality data for research.
1. Document and monitor socio-economic, demographic and other inequalities in cause-specific mortality over time/across generations.
2. Understand the joint progress of morbidity and mortality and to what extent healthy life expectancy keeps pace with total life expectancy.
3. Investigate the links between mental health and cause specific mortality.
4. Investigate the links between early life circumstances, childhood characteristics/behaviour and cause-specific mortality
Benefits reported
The Age 46 survey data is now deposited at the UK Data Archive for researchers to use.
This was a main output in the previous versions of this DSA. The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
A full list of the data collection elements is provided below:
45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
Blood pressure measurement
Grip strength assessment
Balance assessment
Blood sample collection
Activity monitor
Online dietary diary
The CLS have already achieved demonstrable benefits using research and other data including adding outputs to the existing body of evidence that influences research and decision making. These demonstrable benefits have been listed in the above section and include the following:
- adding to the existing body of evidence supporting various scientific publications;
- research evidence used for government briefing papers;
- attracting media coverage to the wider issues surrounding the research.
DARS-NIC-17218-B0W9X-v8.3 23 August 2024 to 22 August 2027
- Title
- 1970 British Cohort Study-Mortality
- Commercial
- No
- Sublicensing
- No
- Datasets
- 7
- Files released
- 0
Datasets: Civil Registrations of Death; Demographics; MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - List Cleaning Report; MRIS - Members and Postings Report
What changed from DARS-NIC-17218-B0W9X-v7.3
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2024-08-23 | |
| End date | 2027-08-22 |
Objective for processing
This Data Sharing Agreement (DSA) permits University College London to retain data that was supplied under previous iterations of this DSA. The DSA does not permit any other processing of the data.
[21 paragraphs unchanged]
Processing activities
This Data Sharing Agreement (DSA) permits University College London to retain data that was supplied under previous iterations of this DSA. The DSA does not permit any other processing of the data.
[8 paragraphs unchanged]
Expected output
This Data Sharing Agreement (DSA) permits University College London to retain data that was supplied under previous iterations of this DSA. The DSA does not permit any other processing of the data. Therefore there will be no additional outputs under this DSA
[15 paragraphs unchanged]
Expected measurable benefits
This Data Sharing Agreement (DSA) permits University College London to retain data that was supplied under previous iterations of this DSA. The DSA does not permit any other processing of the data.
[13 paragraphs unchanged]
Benefits reported
The Age 46 survey data is now deposited at the UK Data Archive for researchers to use . A link to the data is provided here. https//beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8547#!/details . This was a main output in the previous versions of this DSA. The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
The Age 46 survey data is now deposited at the UK Data Archive for researchers to use.
This was a main output in the previous versions of this DSA. The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
[11 paragraphs unchanged]
Currently there have been no direct benefits to this study from processing the data under this for research as it is the first time CLS is requesting permission to use mortality data for research.
[4 paragraphs unchanged]
Objective for processing
The following gives an overview of the study and purposes from historic disseminations.
The Centre for Longitudinal Studies (CLS) at University College London (UCL) requires access to NHS England data for the purpose of the 1970 British Cohort Study (BCS70).
The 1970 British Cohort Study (BCS70) originated in the late 1960s, when there was a great deal of concern amongst doctors and others about the number of babies born with abnormalities, or dying very early in life. It was decided to compare those mothers and babies who had problems, with those who did not in order to see what could be done about this issue. The simplest way to do this was to study all the babies born in one week. With the help of doctors, midwives, and health authorities throughout England, Wales and Scotland, this study was carried out in 1970.
Information was collected on the family background of the mother, the pregnancy and labour, and about the baby at birth and in the first week of the baby’s life. Almost 17,500 babies were studied.
It was not for another 5 years that it was decided that it would be worthwhile trying to find the families from the original birth survey to see what had happened to the babies since 1970 – how healthy they were, how they were getting on at school, and so on. This second survey was carried out in 1975. Since then there have been seven other major surveys, attempting to trace all those born in the week of the original 1970 survey – in 1980, 1986, 1996, 1999/2000, 2004/5, 2008 2012, 2016. The Age 50 survey commenced in January 2020 where it was paused due to the impact of the COVID-19 pandemic but re-commenced in early 2021. Subsequent sweeps* of the study will likely take place every five years.
CLS have access to NHS England data for the purpose of updating participant contact details and mortality information held on CLS systems and for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study.
CLS have previously received record level, identifiable data linked to the cohort from the following datasets.
- MRIS – Cause of Death Report
- MRIS - List Cleaning Report
- MRIS - Members and Postings Report
- MRIS – Cohort Event Notification Report
- MRIS – Flagging Current Status Report
-
MRIS reports were disbanded in 2020 and CLS received the replacement data sets;
-Demographics (CLS now receive Demographics data via DARS-NIC-129836-D5F3W)
- Civil Registrations of Deaths
The lawful basis for processing personal data under the UK GDPR is Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under UK GDPR is Article 9(2)(j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes. In addition, for ethical reasons and under the Common Law Duty of Confidentiality, UCL sought permission from cohort members to access and link their routine health records to their survey data, and to the onward sharing of this linked data in pseudonymised form (via a secure setting with appropriate safeguards).
The Economic and Social Research Council (ESRC) are the funder for this study. The funder will have no ability to suppress or otherwise limit the publication of findings.
Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure backup of data stored in UCL’s Data Safe Haven.
UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.
Expected output
The main outcome from the BCS70 Age 50 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
-Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.
-Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
-Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
-Social capital, social and political participation, attitudes and values, and religion.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Participants will also be asked to complete an online dietary questionnaire. As mentioned above this rich dataset will be shared with the wider research community for research.
Outputs for the mortality data:
database update-The notifications of deaths and embarkations will ensure CLS doesn't waste resources sending invitations to those who have moved away. It will also prevent CLS from contacting those who have died.
Research- The pseudonymised data which will be used for research. Below is a list with some of the research that CLS intends to do using mortality data for research.
1. Document and monitor socio-economic, demographic and other inequalities in cause-specific mortality over time/across generations.
2. Understand the joint progress of morbidity and mortality and to what extent healthy life expectancy keeps pace with total life expectancy.
3. Investigate the links between mental health and cause specific mortality.
4. Investigate the links between early life circumstances, childhood characteristics/behaviour and cause-specific mortality
Benefits reported
The Age 46 survey data is now deposited at the UK Data Archive for researchers to use.
This was a main output in the previous versions of this DSA. The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
A full list of the data collection elements is provided below:
45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
Blood pressure measurement
Grip strength assessment
Balance assessment
Blood sample collection
Activity monitor
Online dietary diary
The CLS have already achieved demonstrable benefits using research and other data including adding outputs to the existing body of evidence that influences research and decision making. These demonstrable benefits have been listed in the above section and include the following:
- adding to the existing body of evidence supporting various scientific publications;
- research evidence used for government briefing papers;
- attracting media coverage to the wider issues surrounding the research.
DARS-NIC-17218-B0W9X-v7.3 25 July 2023 to 24 July 2024
- Title
- 1970 British Cohort Study-Mortality
- Commercial
- No
- Sublicensing
- No
- Datasets
- 7
- Files released
- 0
Datasets: Civil Registrations of Death; Demographics; MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - List Cleaning Report; MRIS - Members and Postings Report
What changed from DARS-NIC-17218-B0W9X-v6.3
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Title | 1970 British Cohort Study-Mortality | |
| Start date | 2023-07-25 | |
| End date | 2024-07-24 | |
| Civil Registrations of Death: legal basis | Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| Demographics: legal basis | Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| MRIS - Cause of Death Report: legal basis | Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| MRIS - Cohort Event Notification Report: legal basis | Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| MRIS - Flagging Current Status Report: legal basis | Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| MRIS - List Cleaning Report: legal basis | Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| MRIS - Members and Postings Report: legal basis | Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'. |
Objective for processing
This Data Sharing Agreement
(DSA)
permits
the retention and no further processing of the
University College London to retain
data
provided
that was supplied
under previous iterations of this
Agreement. No new data flows between NHS Digital and University College London (UCL) will take place under this Agreement. .
DSA.
The
following describes
DSA does not permit any other processing of
the
purposes for which data was supplied under previous versions of this Agreement.
data.
The British Cohort Study 1970 (BCS) is one of Britain’s world renowned national longitudinal birth cohort studies. It follows a large sample of individuals born over a limited period of time (all those born in one week in 1970) through the course of their lives, charting the effects of events and circumstances in early life on outcomes and achievements later on. They show how histories of health, wealth, education, family and employment are interwoven for individuals and vary between them.
The following gives an overview of the study and purposes from historic disseminations.
The
study is run by the
Centre for Longitudinal Studies (CLS) at
University College London (UCL) requires access to NHS England data for
the
University
purpose
of
London, and funded by
the
Economic and Social Research Council.
1970 British Cohort Study (BCS70).
Since 1970 there have been nine attempts to gather information from the whole cohort. Over time, the scope of enquiry has broadened from a medical focus at birth, to encompass physical and educational development at the age of five, physical, educational and social development at the ages of ten and sixteen, and then to include economic development and other wider factors at ages 26, 30, 34, 38 and 42. The most recent survey was Age 46 and future sweeps surveys will take place roughly every 5 years. The ongoing success of the study depends on maintaining contact with as many study members as possible especially during interim periods between surveys.
The 1970 British Cohort Study (BCS70) originated in the late 1960s, when there was a great deal of concern amongst doctors and others about the number of babies born with abnormalities, or dying very early in life. It was decided to compare those mothers and babies who had problems, with those who did not in order to see what could be done about this issue. The simplest way to do this was to study all the babies born in one week. With the help of doctors, midwives, and health authorities throughout England, Wales and Scotland, this study was carried out in 1970.
The study has its origins in the British Births Survey in which information was gathered about almost 17,500 babies. The original study focused on the circumstances and outcomes of birth but since then the study has broadened in scope to map all aspects of health, education, social and economic development. The current survey will provide an updated picture of the circumstances and experiences of those born in the early seventies in England, Scotland and Wales and will help develop an understanding of their progress into the latter period of their lives.
Information was collected on the family background of the mother, the pregnancy and labour, and about the baby at birth and in the first week of the baby’s life. Almost 17,500 babies were studied.
The most recent Age 46 survey began in July 2016 and was scheduled to run until July 2018. As of the beginning of February 2018, data had been collected from just over 6,000 participants and by completion it was projected that approximately 8,500 will have taken part. The Age 46 Survey had a particular focus on health and was conducted by interviewers and registered nurses. The survey involved an interview, anthropometric measurements, blood pressure assessment, measures of physical functioning (grip strength and balance assessments) and the collection of blood samples (for immediate analysis of cholesterol and glycated haemoglobin, storage for future analysis and future DNA extraction). In addition, participants were asked to wear a device which measured physical activity levels for 7 days and to complete an online questionnaire about their diet. The objective measures of health had been funded by the Medical Research Council and the British Heart Foundation.
It was not for another 5 years that it was decided that it would be worthwhile trying to find the families from the original birth survey to see what had happened to the babies since 1970 – how healthy they were, how they were getting on at school, and so on. This second survey was carried out in 1975. Since then there have been seven other major surveys, attempting to trace all those born in the week of the original 1970 survey – in 1980, 1986, 1996, 1999/2000, 2004/5, 2008 2012, 2016. The Age 50 survey commenced in January 2020 where it was paused due to the impact of the COVID-19 pandemic but re-commenced in early 2021. Subsequent sweeps* of the study will likely take place every five years.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
CLS have access to NHS England data for the purpose of updating participant contact details and mortality information held on CLS systems and for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study.
Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.
CLS have previously received record level, identifiable data linked to the cohort from the following datasets.
Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
- MRIS – Cause of Death Report
Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood, Social capital, social and political participation, attitudes and values, and religion.
- MRIS - List Cleaning Report
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
- MRIS - Members and Postings Report
Aim
- MRIS – Cohort Event Notification Report
The ongoing success of the study depends on maintaining contact with as many study participants as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for the study members whose whereabouts are currently unknown. CLS believe that a substantial number of these individuals would be willing to participate in the Age 50 survey if they could be contacted. Previous efforts to re-establish contact for the BCS70 cohort study have been very successful using this route.
- MRIS – Flagging Current Status Report
CLS wish to access NHS Digital data for the purpose of updating participant demographic data held on CLS systems for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study. CLS also requests access to mortality data included within the reports outlined below to be used in the process of contacting participants involved in previous sweeps.
-
Data Summary
MRIS reports were disbanded in 2020 and CLS received the replacement data sets;
CLS are requesting access to record level, identifiable data linked to the cohort from the following Medical Research reports:
-Demographics (CLS now receive Demographics data via DARS-NIC-129836-D5F3W)
MRIS – Cause of Death Report
- Civil Registrations of Deaths
MRIS - List Cleaning Report
The lawful basis for processing personal data under the UK GDPR is Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
MRIS Members and Postings Report
The lawful basis for processing special category data under UK GDPR is Article 9(2)(j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes. In addition, for ethical reasons and under the Common Law Duty of Confidentiality, UCL sought permission from cohort members to access and link their routine health records to their survey data, and to the onward sharing of this linked data in pseudonymised form (via a secure setting with appropriate safeguards).
MRIS – Cohort Event Notification Report
The Economic and Social Research Council (ESRC) are the funder for this study. The funder will have no ability to suppress or otherwise limit the publication of findings.
MRIS – Flagging Current Status Report
Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure backup of data stored in UCL’s Data Safe Haven.
Under previous versions of this agreement, CLS has benefited from the use of NHS Digital data to assist with maximising participation in Age Surveys. Therefore, a further wave of list cleaning exercises was requested, i.e. this agreement, to try and find updated addresses for those who are found during fieldwork to have moved from the address held. This will further boost the number who can be contacted and invited to participate. Multiple list cleans have been requested for the purpose of tracing address details of participants over the period leading up to the Age 50 survey. Distribution of study materials, annual courtesy letters and pilot studies planned for the 2019-2020 period would benefit from the most up to date contact information for participants, thus an additional list clean is required.
UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.
UCL’s legal bases for processing the data under General Data Protection Regulation is bases under Article 6(1)(e) ‘processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller’ & Article 9(2)(j) ‘processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject’.
Aggregated data with small numbers suppressed will be made available to the research community in late 2019, forming an invaluable resource for health research. Researchers will be able to use the rich life-history data collected over the duration of the study’s life in conjunction with the data collected in the BCS70 Age 46 survey to examine the longitudinal predictors of health in mid-life. It is then planned that the measures conducted will be repeated in future sweeps of the study, which will allow for research which deepens the understanding of changes in health which occur with ageing. No patient identifiable data is made available for research.
The cohort currently held by NHS Digital, totalling roughly 15,976, was calculated as an adaptation of the original participant population, excluding study members in Scotland. Of the roughly 15,976 individuals invited to participate in the BCS70 Age 50 Survey, CLS predict that researchers will have difficulty contacting a small proportion of this population for the purposes of distributing study material and invitations for participating in Age Surveys. Preparations for the previous Age Survey (46) highlighted a group of study members where contact has been lost between researchers and the study member due to out-of-date address information. These are not individuals which have informed CLS that they wish to withdraw from the study, the researchers have simply lost touch with them as they have moved home and not informed CLS. This application for the MRIS list cleaning report is for the members of the cohort lost to follow up only.
CLS have commissioned Copyprint UK Limited to distribute mailings to all participants including regular messages regarding Age Surveys and to maintain contact with the study. These tasks serve the purpose of ensuring maximum participation in each of the Age Surveys planned throughout the study. Copyprint will have access to participant demographic information and contact details in order to fulfil their obligation. This includes data which has been supplied to Copyprint directly from NHS Digital's dissemination and data which has been 'washed' through being updated by the data subject directly. Copyprint are not permitted to use the data for any other purpose.
University College London (UCL) are the sole Data Controller for this Agreement. All Data Processors party to this agreement are acting upon the instruction of the controller.
Processing activities
This Data Sharing Agreement
(DSA)
permits
the retention of the
University College London to retain
data
provided
that was supplied
under previous iterations of this
Agreement. No new data flows between NHS Digital and University College London (UCL) will take place under this Agreement.
DSA.
The
following describes
DSA does not permit any other processing of
the
processing activities which took place under previous versions of this Agreement.
data.
NHS address tracing. CLS wish to use the patient status and tracking products which uses NHS registration data to trace as many of the 1370 supplied BCS70 study members as possible, either by finding new address details or verifying existing address details for the cohort.
Under previous versions of this DSA CLS transferred data to NHS England. The data consisted of identifying details specifically NHS number, Date of Birth (DOB), first name, Last Name, Middle name, Gender, Postcode and study ID for the cohort to be linked with NHS England data.
1.1 CLS will supply NHS Digital with a file of 1370 study members to match to NHS data. The file supplied will only contain eligible study members who have participated in at least one wave of BCS70. It will not include study members known to have died or to have withdrawn from the study. The file will contain the following data items:
NHS England provided the relevant records from the Demographics and Civil Registrations of Deaths dataset to CLS. The data contained contain directly identifying data items such as Address’, postcodes, NHS Number, DOB, Gender, Fact of Death
- CLS identifier
The data is stored on servers at UCL.
- First name
The data can be accessed by authorised CLS personnel via remote access on UCL-issued devices from their work organisation office or from home. The data will always remain on the servers at UCL CLS. Personnel are prohibited from downloading or copying data to local devices.
- Last name
Personnel are prohibited from downloading or copying data to local devices
- Middle name (where available),
The data will not leave the UK.
- Date of birth
Access is restricted to employees of UCL who have authorisation from the principal investigator of the BCS70 study.
- Sex
All personnel accessing the data have been appropriately trained in data protection and confidentiality
- Last known address, and postcode
- NHS Number
1.2 CLS want all 1370 cases to be sent for auto-matching.
1.3 Once the auto-matching process is complete, CLS want any unsuccessful cases to be put through for operator matching.
1.4. NHS Digital would supply the following details to CLS:
- CLS identifier
- Latest surname
- Latest forename
- Latest middle name (where available),
- Date of birth
- Gender
- Latest address and postcode
- Fact of Death
- Date of address registration or update
- NHS Number.
In addition to the receipt of any 'new' matched address information for the study members, CLS would like NHS Digital to add an additional variable that describes the outcome of the matching process to the data that is returned to CLS – that is, this additional variable will allocate each study member to one of the following three categories:
• new/different address found,
• existing address confirmed,
• no match found.
CLS will also submit 600 participants from the original file who have been matched through the Automatic Cohort Validation under DARS-NIC-17218-B0W9X-v2.9 version of this agreement for manual tracing. Other than the amendment to the matching process applied to these participants, this data flow will replicate the steps provided above.
The data file supplied by NHS Digital, will be reviewed by CLS. Where addresses supplied by NHS Digital are new or more recent than the address currently held on the CLS confidential database the new addresses will be uploaded.
CLS will use Copyprint to send correspondence to participants inviting them to re-engage with the study. Furthermore, addresses will be used by CLS to invite study members to take part in the current survey and future surveys. All BCS study members contact information is held in secure confidential address databases.
Study members newly traced would be written to and invited to re-engage with the study. Any study members choosing not to take part in the study are flagged on this database with a code denoting whether their refusal is temporary (i.e. for a particular wave/survey) or permanent (i.e. they wish to have no further involvement in the study). Any previously deposited anonymised survey data for a study member and confidential data from the address database are retained unless the study member specifically asks us not to, in which case this data is securely deleted.
With regard to a request for 'withdrawal' from a participant CLS classifies them as a 'withdrawal from the current survey' or a 'withdrawal from the study' and these are handled slightly differently:
• Withdrawal from the current survey: CLS will flag this on its computer system to indicate that the participant will not be taking part in the current survey and the reason for not wanting to take part is also recorded. For example, they may just not have the time to take part. Therefore there will be no further contact with the participant for the duration of the current survey but they will be invited to take part in the next survey.
• Withdrawal from the study: CLS will flag this on its computer system as a permanent refusal to indicate that the participant will not be taking any further part in the study itself and the reason for this type of withdrawal is also recorded for analysis purposes. Therefore there will be no further contact with the participant for the remainder of the longitudinal study. If this request is received in writing then CLS will acknowledge the request and notify the participant that they have been flagged and will no longer be contacted or receive any further communications. This request may sometimes be accompanied by a request for the destruction of their data.
All those accessing the data supplied by NHS Digital are substantive employees of University College London or employees of subcontractor organisation carrying work on behalf of UCL. CLS have identified the scenarios where NHS Digital data will be processed by CLS and its Data Processor.
CLS will write to all newly traced cohort members at the addresses that are supplied by NHS Digital – and will ask them to confirm their address by return of a reply slip, telephone, email or via our website. CLS will use Copyprint to send correspondence on behalf of CLS. For this purpose CLS will send names and addresses to Copyprint. If cohort members confirm their address this will be recorded on our database as a confirmed address. If the letter is ‘returned to sender’ this will be also be recorded our database. There will also be cases where no confirmation is received and our letter is not returned to sender.
The addresses previously obtained from NHS Digital were used to invite study members (whom CLS have lost contact with are classed as ‘UNTRACED’) to take part in the BCS70 Age 46 survey. However, this data is never sent or published to the UK Data Service.
All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data).
Expected output
This Data Sharing Agreement (DSA) permits University College London to retain data that was supplied under previous iterations of this DSA. The DSA does not permit any other processing of the data. Therefore there will be no additional outputs under this DSA
[7 paragraphs unchanged]
Participants will also be asked to complete an online dietary questionnaire.
As mentioned above this rich dataset will be shared with the wider research community for research.
As mentioned above this rich dataset will be shared with the wider research community for research.
[2 paragraphs unchanged]
Research- The pseudonymised data which will be used for
research.Below
research. Below
is a list with some of the research that CLS intends to do using mortality data for research.
[3 paragraphs unchanged]
4. Investigate the links between early life circumstances, childhood characteristics/behaviour and cause-specific
mortality.
mortality
Expected measurable benefits
Benefits
This Data Sharing Agreement (DSA) permits University College London to retain data that was supplied under previous iterations of this DSA. The DSA does not permit any other processing of the data.
[12 paragraphs unchanged]
Benefits of the list cleaning and notifications of death :
[1 paragraph unchanged]
Benefits reported
The Age 46 survey data is now deposited at the UK Data
[8 words unchanged]
to the data is provided here. https//beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8547#!/details . This was a main
out put
output
in the previous versions of this DSA.
The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
[16 paragraphs unchanged]
Objective for processing
This Data Sharing Agreement (DSA) permits University College London to retain data that was supplied under previous iterations of this DSA. The DSA does not permit any other processing of the data.
The following gives an overview of the study and purposes from historic disseminations.
The Centre for Longitudinal Studies (CLS) at University College London (UCL) requires access to NHS England data for the purpose of the 1970 British Cohort Study (BCS70).
The 1970 British Cohort Study (BCS70) originated in the late 1960s, when there was a great deal of concern amongst doctors and others about the number of babies born with abnormalities, or dying very early in life. It was decided to compare those mothers and babies who had problems, with those who did not in order to see what could be done about this issue. The simplest way to do this was to study all the babies born in one week. With the help of doctors, midwives, and health authorities throughout England, Wales and Scotland, this study was carried out in 1970.
Information was collected on the family background of the mother, the pregnancy and labour, and about the baby at birth and in the first week of the baby’s life. Almost 17,500 babies were studied.
It was not for another 5 years that it was decided that it would be worthwhile trying to find the families from the original birth survey to see what had happened to the babies since 1970 – how healthy they were, how they were getting on at school, and so on. This second survey was carried out in 1975. Since then there have been seven other major surveys, attempting to trace all those born in the week of the original 1970 survey – in 1980, 1986, 1996, 1999/2000, 2004/5, 2008 2012, 2016. The Age 50 survey commenced in January 2020 where it was paused due to the impact of the COVID-19 pandemic but re-commenced in early 2021. Subsequent sweeps* of the study will likely take place every five years.
CLS have access to NHS England data for the purpose of updating participant contact details and mortality information held on CLS systems and for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study.
CLS have previously received record level, identifiable data linked to the cohort from the following datasets.
- MRIS – Cause of Death Report
- MRIS - List Cleaning Report
- MRIS - Members and Postings Report
- MRIS – Cohort Event Notification Report
- MRIS – Flagging Current Status Report
-
MRIS reports were disbanded in 2020 and CLS received the replacement data sets;
-Demographics (CLS now receive Demographics data via DARS-NIC-129836-D5F3W)
- Civil Registrations of Deaths
The lawful basis for processing personal data under the UK GDPR is Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under UK GDPR is Article 9(2)(j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes. In addition, for ethical reasons and under the Common Law Duty of Confidentiality, UCL sought permission from cohort members to access and link their routine health records to their survey data, and to the onward sharing of this linked data in pseudonymised form (via a secure setting with appropriate safeguards).
The Economic and Social Research Council (ESRC) are the funder for this study. The funder will have no ability to suppress or otherwise limit the publication of findings.
Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure backup of data stored in UCL’s Data Safe Haven.
UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.
Expected output
This Data Sharing Agreement (DSA) permits University College London to retain data that was supplied under previous iterations of this DSA. The DSA does not permit any other processing of the data. Therefore there will be no additional outputs under this DSA
The main outcome from the BCS70 Age 50 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
-Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.
-Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
-Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
-Social capital, social and political participation, attitudes and values, and religion.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Participants will also be asked to complete an online dietary questionnaire. As mentioned above this rich dataset will be shared with the wider research community for research.
Outputs for the mortality data:
database update-The notifications of deaths and embarkations will ensure CLS doesn't waste resources sending invitations to those who have moved away. It will also prevent CLS from contacting those who have died.
Research- The pseudonymised data which will be used for research. Below is a list with some of the research that CLS intends to do using mortality data for research.
1. Document and monitor socio-economic, demographic and other inequalities in cause-specific mortality over time/across generations.
2. Understand the joint progress of morbidity and mortality and to what extent healthy life expectancy keeps pace with total life expectancy.
3. Investigate the links between mental health and cause specific mortality.
4. Investigate the links between early life circumstances, childhood characteristics/behaviour and cause-specific mortality
Benefits reported
The Age 46 survey data is now deposited at the UK Data Archive for researchers to use . A link to the data is provided here. https//beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8547#!/details . This was a main output in the previous versions of this DSA. The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
A full list of the data collection elements is provided below:
45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
Blood pressure measurement
Grip strength assessment
Balance assessment
Blood sample collection
Activity monitor
Online dietary diary
Currently there have been no direct benefits to this study from processing the data under this for research as it is the first time CLS is requesting permission to use mortality data for research.
The CLS have already achieved demonstrable benefits using research and other data including adding outputs to the existing body of evidence that influences research and decision making. These demonstrable benefits have been listed in the above section and include the following:
- adding to the existing body of evidence supporting various scientific publications;
- research evidence used for government briefing papers;
- attracting media coverage to the wider issues surrounding the research.
DARS-NIC-17218-B0W9X-v6.3 20 December 2021 to 19 December 2022
- Title
- 1970 British Cohort Study
- Commercial
- No
- Sublicensing
- No
- Datasets
- 7
- Files released
- 0
Datasets: Civil Registrations of Death; Demographics; MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - List Cleaning Report; MRIS - Members and Postings Report
What changed from DARS-NIC-17218-B0W9X-v5.4
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Title | 1970 British Cohort Study | |
| Start date | 2021-12-20 | |
| End date | 2022-12-19 | |
| Civil Registrations of Death: legal basis | Health and Social Care Act 2012 – s261(7); Other-National Health Service Act 2006 - s251 - 'Control of patient information'. , | |
| Demographics: legal basis | Health and Social Care Act 2012 – s261(7); Other-National Health Service Act 2006-S251- Control of Patient information' |
Objective for processing
Background
This Data Sharing Agreement permits the retention and no further processing of the data provided under previous iterations of this Agreement. No new data flows between NHS Digital and University College London (UCL) will take place under this Agreement. . The following describes the purposes for which data was supplied under previous versions of this Agreement.
[26 paragraphs unchanged]
***AMENDMENT***
This amendment in to add additional data processors who would be appointed to carry out upcoming fieldwork interviews. CLS have contracted an external supplier NatCen Social Research (the trading name of the National Centre for Social Research) to carry out the individual study members' interviews. NatCen was commissioned to run interviews with study members for the Age 50 Survey which commenced in January 2020. Fieldwork had to be paused due to the COVID19 pandemic and it is hoped that fieldwork will restart in January 2021 . NatCen have also contracted an additional Data Processor, Kantar Public, to assist with these tasks.
Kantar Public was also contracted to conduct two surveys which will explore the impact of the COVID-19 pandemic on different aspects of life. These two surveys follow an initial survey conducted by CLS in May 2020. The first of the surveys to be completed by Kantar was conducted in September/October 2020 and participants could only take part online. The second will commence in January 2021 and will provide those unable to take part online with an opportunity to take part via telephone.
The age 50 sweep started in January 2020 and then had to be paused due to COVID19 pandemic.
In may 2020 CLS conducted a COVID19 survey (Wave 1) which explored the impact of COVID19 pandemic on different aspects of life. Kantar Public was contracted to conduct another two surveys. The first of the surveys (Wave 2) to be completed by Kantar was conducted in September/October 2020 and participants could only take part online. The second will commence in January 2021 (Wave3) and will provide those unable to take part online with an opportunity to take part via telephone.
In wave 1, The aim of the survey was to collect insights into the lives of study participants including their physical and mental health and wellbeing, family and relationships, education, work, and finances during the lockdown. The questions focused mainly on how participants’ lives had changed from just before the outbreak of the pandemic in March 2020 up until their response to the survey during the height of the lockdown restrictions in May 2020. This Wave 1 data is now available from the UKDS website- https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8658
The aim of Wave 2 survey is to capture how participants’ lives have changed from Wave 1 (collected at the height of the lockdown restrictions in May 2020) until late Summer/Early Autumn 2020. The topic areas mirror closely those for Wave 1, with additional questions about:
~ Health care
~ Financial transfers
~ Life events
~ Children’s schooling in summer and autumn term
The full Wave 2 questionnaire is available here:
https://cls.ucl.ac.uk/wp-content/uploads/2017/02/UCL-Centre-for-Longitudinal-Studies-COVID-19-Online-Survey-Questionnaire-Wave-2-Sept-2020.pdf
Once the data is available and ready, Wave 2 and 3 data will also be made available for researchers to use via the UKDS.
Processing activities
ACTIVITY. NHS address tracing. CLS wish to use the patient status and tracking products which uses NHS registration data to trace as many of the 1370 supplied BCS70 study members as possible, either by finding new address details or verifying existing address details for the cohort.
This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement. No new data flows between NHS Digital and University College London (UCL) will take place under this Agreement. The following describes the processing activities which took place under previous versions of this Agreement.
NHS address tracing. CLS wish to use the patient status and tracking products which uses NHS registration data to trace as many of the 1370 supplied BCS70 study members as possible, either by finding new address details or verifying existing address details for the cohort.
[36 paragraphs unchanged]
CLS has submitted an amendment to the CAG approval for Section 251 coverage to include two new processors to conduct study tasks assisting with carrying out interviews with study participants. Once this amendment has been approved, CLS will submit an amendment to this agreement to add these additional processors to the agreement and describe the relevant flows of data.
[1 paragraph unchanged]
***AMENDMENT (as per processing activities carried out by Copyprint UK Limited).
In order to conduct the age 50 survey Natcen and Kantar will be supplied with sample files which will include contact details (names, addresses, telephone numbers and email addresses) for participants. These sample files will include addresses which have been provided by NHS Digital.
The sample file will include information for all study members with a confirmed address AND those addresses supplied by NHS Digital which were neither confirmed nor returned to sender. In some occasions addresses with a 'returned to sender’ flag will also be sent to NatCen depending on cohort member previous participation. NatCen will send a letter to all study members on behalf of CLS, which will invite them to participate in the forthcoming survey and will let study members know that an interviewer from NatCen or from Kantar Public will be making contact with them soon.
NatCen will allocate half of the study members to be contacted and interviewed by Kantar Public interviewers. NatCen will send the names and addresses to these cases to Kantar Public in order that they can allocate study members to their interviewers.
NatCen interviewers and Kantar Public interviewers will both gain access to the names and addresses via NatCen systems. Kantar Public interviewers will access NatCen systems via a Virtual Machine Network.
At the end of each interview, names, addresses and other contact details will be confirmed or updated on NatCen
systems prior to being returned to CLS.
All personal information will then be destroyed by NatCen on completion of their contract. Kantar Public do not hold any data on their own systems. Access to NHS data by Kantar Public is strictly through a Virtual Machine Network used to look up participant data.
It is these obligations that define both NatCen and Kantar Public as Data Processors as they will be processing NHS Digital data without CLS replacing the information on their database using details confirmed by the data subject directly.
Kantar Public will also use participant's contact details (names, addresses, telephone numbers and email addresses) provided by NHS digital to CLS, to carry out the COVID19 surveys. Please note that the sample file for the first COVID-19 survey to be conducted by Kantar Public did not include any addresses provided by NHS Digital but we hope to be able to supply these addresses in the sample file for the next survey.
Interviewers working for Kantar Public will gain access to the names and addresses via their systems. At the end of each interview names, addresses and other contact details will be confirmed or updated on Kantar systems prior to being returned to CLS. All personal information provided to, or collected by the fieldwork agencies will then be destroyed on completion of their contracts.
Expected output
The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
The main outcome from the BCS70 Age 50 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
A full list of the data collection elements is provided below:
45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
Blood pressure measurement
Grip strength assessment
Balance assessment
Blood sample collection
Activity monitor
Online dietary diary
The data will be available for researchers to access via the UK Data Service from October 2019, providing an important resource for UK Social Science, including researchers in health and social care.
[1 paragraph unchanged]
Health,
-Health,
well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking,
diet, exercise), cognitive function.
diet, exercise), cognitive function.
-Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
-Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
-Social capital, social and political participation, attitudes and values, and religion.
Social capital, social and political participation, attitudes and values, and religion.
[2 paragraphs unchanged]
The data will be available for researchers to access via the UK Data Service from early 2023.
As mentioned above this rich dataset will be shared with the wider research community for research.
Outputs for the
List Clean:
mortality data:
The main outcome from the BCS70 Age 50 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
database update-The notifications of deaths and embarkations will ensure CLS doesn't waste resources sending invitations to those who have moved away. It will also prevent CLS from contacting those who have died.
The addresses previously obtained from NHS Digital were used to invite study members to take part in the BCS70 Age 46 survey and they will be used to invite study members to take part in the future sweep age 50 taking place in 2020. The previous application requested an extension to the current agreement to keep the data we currently hold and to carry out another 2 list cleans in preparation for age 50, and to receive notifications of deaths and embarkations biannually.
Research- The pseudonymised data which will be used for research.Below is a list with some of the research that CLS intends to do using mortality data for research.
1. Document and monitor socio-economic, demographic and other inequalities in cause-specific mortality over time/across generations.
2. Understand the joint progress of morbidity and mortality and to what extent healthy life expectancy keeps pace with total life expectancy.
3. Investigate the links between mental health and cause specific mortality.
4. Investigate the links between early life circumstances, childhood characteristics/behaviour and cause-specific mortality.
Expected measurable benefits
The British Cohort Study 1970 (BCS70) is one of Britain’s world renowned national longitudinal birth cohort studies. It follows all those born in one week in 1970 through the course of their lives, charting the effects of experiences in early life on outcomes and achievements later on. They show how histories of health, wealth, education, family and employment are interwoven for individuals and vary between them.
Benefits
The study has its origins in the British Births Survey in which information was gathered about almost 17,500 babies. The original study focused on the circumstances and outcomes of birth but since then the study has broadened in scope to map all aspects of health, education, social and economic development. Forthcoming sweeps will provide an updated picture of the circumstances and experiences of those born in the early seventies in England, Scotland and Wales and will help develop an understanding of their progress into the latter period of their lives.
The study is run by the Centre for Longitudinal Studies (CLS), at the UCL Institute of Education and funded by the Economic and Social Research Council (ESRC).
Since 1970 information has been gathered from the cohort on nine previous occasions with the scope of enquiry broadened from a strictly medical focus at birth, to encompass physical and educational development at the age of seven, physical, educational and social development at the ages of eleven and sixteen, and then to include economic development and other wider factors at ages 23, 33, 42, 44, 46, 50 and 55. The age study is currently in the field. Future sweeps of the study are planned to take place every five years.
The data collected by the study is used extensively by researchers in the UK and elsewhere and has had much impact on policy over the years, for example the Welsh Government policy on early years planning - http://www.closer.ac.uk/news-opinion/2013/welsh-governments-early-years-childcare-plan-draws-evidence/ The continuing success of the study will be underpinned by the successful matching of untraced cases.
[1 paragraph unchanged]
Benefits of the list cleaning:
The use of the data will result in papers that will be published, presented at conferences and sometimes reach media coverage. Most papers will contribute to a body of evidence which will result in improvements to health care users experience or health care delivery. It is expected that occasionally, these may have a higher impact such as the examples highlighted below:
For example the Welsh Government policy on early years planning - http://www.closer.ac.uk/news-opinion/2013/welsh-governments-early-years-childcare-plan-draws-evidence/ The continuing success of the study will be underpinned by the successful matching of untraced cases.
Encouraging reading for pleasure and children’s cognitive development. Research using data from the 1970 British Cohort Study (BCS70) has revealed how reading for pleasure can help children excel not only in English but also in maths. This important work, led by CLS, has had a big influence on reading for pleasure programmes, policies and practice in the UK and beyond, benefitting millions of children worldwide. The link between reading for pleasure and children’s maths and vocabulary scores was covered extensively in the media, including in articles in the Daily Telegraph, Sydney Morning Herald and Vancouver Sun and in interviews for BBC Radio 4’s Today Programme, BBC London and Al Jazeera. The findings attracted a remarkable amount of interest from schools, libraries and literacy organisations around the world. They have been used to help protect library services, to persuade children of all ages to spend more time reading, and to encourage parents to support schools’ home reading initiatives. In the UK, the research was cited in a 2015 Department for Education report, ‘Reading: the next steps’, underpinning recommendations for government funding to support book clubs, resources for reading, and instructing schools to promote library membership. Selected coverage:
The Guardian – ‘Reading for fun improves children’s brains, study confirms’
Daily Telegraph – ‘Reading for pleasure ‘boosts pupils’ results in maths’
Vancouver Sun – ‘ Libraries are worthwhile public investment’
Sydney Morning Herald – ‘Reading gives kids an edge, study says’
On average, eighty research papers are written every year using the BCS70 dataset, many of these papers are in the area of health or social care and contribute to advance further knowledge in health.
The specific benefits to society, using the data accessed through the sub-license, would be stated by each applicant as part of their application (as required in the Accredited research form and Research proposal )e.g. 'How your findings is expected to benefit society?' How does the project provide a public benefit'? 'Contribution towards
public policy or journal publications 'CLS is expected to further require the applicant to describe the benefits of
their intended research to health and social care.
Benefits of the list cleaning and notifications of death :
[1 paragraph unchanged]
Benefits of receiving notifications of deaths and embarkations:
These notifications are used to prevent us from seeking to contact those who have died and thus potentially causing distress to friends and relatives and those who are no longer in Great Britain as this would be a waste of resources.
***Amendment
CLS moved very quickly during the UK's lockdown to capture time-critical aspects of people's experiences of the COVID19 pandemic. CLS's aim was to help understand the economic, social and health impacts of the COVID19 crisis. CLS's studies, including BCS70 are an especially valuable resource for understanding the lifelong factors which shape vulnerability and resilience to the pandemic's effects. The data collected by the COVID19 surveys is now available for download at the UKDS. The data will be used extensively by researchers in the UK and elsewhere and has the potential to impact on policy.
Benefits reported
There have been hundreds of published journal articles, books, chapters, reports or conference presentations based on data from the 1970 British Cohort Study.
The Age 46 survey data is now deposited at the UK Data Archive for researchers to use . A link to the data is provided here. https//beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8547#!/details . This was a main out put in the previous versions of this DSA.
Below are some examples of existing publications using BCS70 data benefiting public health:
The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
• TAYLOR, B and WADSWORTH, J. (1987) Maternal smoking during pregnancy and lower respiratory tract illness in early life. Archives of Disease in Childhood, 62(8), 786-791.
A full list of the data collection elements is provided below:
IMPACT: Research from BCS70 has contributed to the understanding of the effects of maternal smoking on child health.
45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
SUMMARY: In a national study of 12,743 children maternal, but not paternal, smoking was confirmed as having a significant influence on the reported incidence of bronchitis and admission to hospital for lower respiratory tract illness during the first five years of life. Reported rates of admissions to hospital for lower respiratory tract diseases were found to be as high in children born to mothers who stopped smoking during pregnancy as in those whose mothers smoked continuously both during and after pregnancy. Rates of admissions to hospital for lower respiratory tract diseases in children whose mothers started smoking only postnatally were no higher than in those whose mothers remained non-smokers. Postnatal smoking seemed to exert a significant influence on the reported incidence of bronchitis, but less than smoking during pregnancy. These findings suggest that maternal smoking influences the incidence of respiratory illnesses in children mainly through a congenital effect, and only to a lesser extent through passive exposure after birth.
Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
• MARMOT, M and BELL, R. (2016) Social inequalities in health: a proper concern of epidemiology. Annals of Epidemiology, 26(4), 238-240.
Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
IMPACT: Research using BCS70 has highlighted an interrogated socio-economic inequalities in health.
Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
Abstract: Social inequalities are a proper concern of epidemiology. Epidemiological thinking and modes of analysis are central, but epidemiological research is one among many areas of study that provide the evidence for understanding the causes of social inequalities in health and what can be done to reduce them. Understanding the causes of health inequalities requires insights from social, behavioural and biological sciences, and a chain of reasoning that examines how the accumulation of positive and negative influences over the life course leads to health inequalities in adult life. Evidence that the social gradient in health can be reduced should make us optimistic that reducing health inequalities is a realistic goal for all societies.
Blood pressure measurement
• PLOUBIDIS, G.B, SULLIVAN, A, BROWN, M and GOODMAN, A. (2017) Psychological Distress in Mid-Life: Evidence from the 1958 and 1970 British Birth Cohorts. Psychological Medicine, 47(2), 291-303.
Grip strength assessment
IMPACT: Research using BCS70 has highlighted the growing problem of depression in the UK.
Balance assessment
Abstract: This paper addresses the levels of psychological distress experienced at age 42 years by men and women born in 1958 and 1970. Comparing these cohorts born 12 years apart, we ask whether psychological distress has increased, and, if so, whether this increase can be explained by differences in their childhood conditions. Data were utilized from two well-known population-based birth cohorts, the National Child Development Study and the 1970 British Cohort Study. Latent variable models and causal mediation methods were employed. After establishing the measurement equivalence of psychological distress in the two cohorts we found that men and women born in 1970 reported higher levels of psychological distress compared with those born in 1958. These differences were more pronounced in men (b = 0.314, 95% confidence interval 0.252–0.375), with the magnitude of the effect being twice as strong compared with women (b = 0.147, 95% confidence interval 0.076–0.218). The effect of all hypothesized early-life mediators in explaining these differences was modest. Our findings have implications for public health policy, indicating a higher average level of psychological distress among a cohort born in 1970 compared with a generation born 12 years earlier. Due to increases in life expectancy, more recently born cohorts are expected to live longer, which implies – if such differences persist – that they are likely to spend more years with mental health-related morbidity compared with earlier-born cohorts.
Blood sample collection
• V.P. Mateia, A.I. Mihăilescub, L.V. Diaconescuc, T. Purnichid, R. Grigorașe, O. Popa-Veleac (2018) Depression in young adults diagnosed with cancer – an analysis of the outcomes of 1970 British Cohort Study.
Activity monitor
IMPACT: Research using BCS70 Cohort Study data has contributed to the understanding of the risk of depression in young patients diagnosed with cancer.
Online dietary diary
Summary
Currently there have been no direct benefits to this study from processing the data under this for research as it is the first time CLS is requesting permission to use mortality data for research.
The study found that the risk of depression is higher at people with onset of cancer before 30. The study did not identify an increased risk for depression by socioeconomic status. Instead, they suggest the importance of active screening and treatment of depression at young patients with cancer.
The CLS have already achieved demonstrable benefits using research and other data including adding outputs to the existing body of evidence that influences research and decision making. These demonstrable benefits have been listed in the above section and include the following:
Detailed information about the study can be found here https://www.sciencedirect.com/science/article/pii/S0022399918303088?via%3Dihub
- adding to the existing body of evidence supporting various scientific publications;
BANN, D, JOHNSON, W, LI, L, KUH, D and HARDY, R. (2018) Socioeconomic inequalities in childhood and adolescent body-mass index, weight, and height from 1953 to 2015: an analysis of four longitudinal, observational, British birth cohort studies. Lancet Public Health, 3(4), e194-e203.
- research evidence used for government briefing papers;
IMPACT: Research using BCS70 Cohort Study data has contributed to the understanding of how socioeconomic inequalities in childhood body-mass index (BMI) have been documented in high-income countries, how they have changed over time, how inequalities in the composite parts (ie, weight and height) of BMI have changed, and whether inequalities differ in magnitude across the outcome distribution. The study investigated how socioeconomic inequalities in childhood and adolescent weight, height, and BMI have changed over time in Britain.
- attracting media coverage to the wider issues surrounding the research.
Detailed information about the study can be found here https://www.sciencedirect.com/science/article/pii/S2468266718300458?via%3Dihub
CHENG, H and FURNHAM, A. (2018) Teenage locus of control, psychological distress, educational qualifications and occupational prestige as well as sex are independent predictors of adult binge drinking. Alcohol, advance online access, 1 Sept 2018.
IMPACT : Research using BCS70 Cohort Study data has contributed to the understanding of how various psychological and socio-demographic factors in childhood and adulthood that relate to alcohol intake and binge drinking at age 42 years.
abstract:
Data were drawn from the 1970 British Cohort Study (BCS70), The analytic sample comprised 5267 cohort members with data on parental social class at birth, cognitive ability at age 10, locus of control at age 16, psychological distress at age 30, educational qualifications at age 34, and current occupation and alcohol consumption at age 42 years. Results showed that sex (male), lower parental social class, adolescent external locus of control, psychological distress, lower scores on childhood intelligence, lower educational qualifications and less professional occupations were all significantly and positively associated with binge drinking in adulthood. Both psychological and social factors influence adult excessive alcohol consumption. Adolescent locus of control beliefs had a modest but significant effect on adult binge drinking 26 years later.
detailed information can be found here:
https://www.sciencedirect.com/science/article/pii/S0741832916301677?via%3Dihub
For more information about published work using this study access cls.ucl.ac.uk
*** Amendment
Henderson, M., Fitzsimons, E., Ploubidis, G., Richards, M., and Patalay, P. (2020) Mental health during lockdown: evidence from four generations - Initial findings from the COVID-19 Survey in Five National Longitudinal Studies. London: UCL Centre for Longitudinal Studies.
IMPACT: Research on the impact of COVID 19 highlighted the large mental health differences across generations, with young people, specially women aged 19 and 30, at the greatest risk of depression, anxiety, loneliness and low life satisfaction.
Looking at change is a key benefit of a longitudinal study. CLS researchers found that young women (aged 30) showed the biggest increase in mental health problems since they were previously assessed some years before compared to middle-aged (aged 50) and older adults (aged 62). While this change in mental health will reflect change that may naturally occur at this stage of life, as well as change attributable to the pandemic, this finding chimes with other studies which have also shown that young women have experienced the largest increase in mental health problems due to COVID-19.
Detailed information about the study can be found via the link below.
https://cls.ucl.ac.uk/wp-content/uploads/2017/02/Mental-health-during-lockdown-%E2%80%93-initial-findings-from-COVID-19-survey-1.pdf
Objective for processing
This Data Sharing Agreement permits the retention and no further processing of the data provided under previous iterations of this Agreement. No new data flows between NHS Digital and University College London (UCL) will take place under this Agreement. . The following describes the purposes for which data was supplied under previous versions of this Agreement.
The British Cohort Study 1970 (BCS) is one of Britain’s world renowned national longitudinal birth cohort studies. It follows a large sample of individuals born over a limited period of time (all those born in one week in 1970) through the course of their lives, charting the effects of events and circumstances in early life on outcomes and achievements later on. They show how histories of health, wealth, education, family and employment are interwoven for individuals and vary between them.
The study is run by the Centre for Longitudinal Studies (CLS) at the University of London, and funded by the Economic and Social Research Council.
Since 1970 there have been nine attempts to gather information from the whole cohort. Over time, the scope of enquiry has broadened from a medical focus at birth, to encompass physical and educational development at the age of five, physical, educational and social development at the ages of ten and sixteen, and then to include economic development and other wider factors at ages 26, 30, 34, 38 and 42. The most recent survey was Age 46 and future sweeps surveys will take place roughly every 5 years. The ongoing success of the study depends on maintaining contact with as many study members as possible especially during interim periods between surveys.
The study has its origins in the British Births Survey in which information was gathered about almost 17,500 babies. The original study focused on the circumstances and outcomes of birth but since then the study has broadened in scope to map all aspects of health, education, social and economic development. The current survey will provide an updated picture of the circumstances and experiences of those born in the early seventies in England, Scotland and Wales and will help develop an understanding of their progress into the latter period of their lives.
The most recent Age 46 survey began in July 2016 and was scheduled to run until July 2018. As of the beginning of February 2018, data had been collected from just over 6,000 participants and by completion it was projected that approximately 8,500 will have taken part. The Age 46 Survey had a particular focus on health and was conducted by interviewers and registered nurses. The survey involved an interview, anthropometric measurements, blood pressure assessment, measures of physical functioning (grip strength and balance assessments) and the collection of blood samples (for immediate analysis of cholesterol and glycated haemoglobin, storage for future analysis and future DNA extraction). In addition, participants were asked to wear a device which measured physical activity levels for 7 days and to complete an online questionnaire about their diet. The objective measures of health had been funded by the Medical Research Council and the British Heart Foundation.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.
Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood, Social capital, social and political participation, attitudes and values, and religion.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Aim
The ongoing success of the study depends on maintaining contact with as many study participants as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for the study members whose whereabouts are currently unknown. CLS believe that a substantial number of these individuals would be willing to participate in the Age 50 survey if they could be contacted. Previous efforts to re-establish contact for the BCS70 cohort study have been very successful using this route.
CLS wish to access NHS Digital data for the purpose of updating participant demographic data held on CLS systems for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study. CLS also requests access to mortality data included within the reports outlined below to be used in the process of contacting participants involved in previous sweeps.
Data Summary
CLS are requesting access to record level, identifiable data linked to the cohort from the following Medical Research reports:
MRIS – Cause of Death Report
MRIS - List Cleaning Report
MRIS Members and Postings Report
MRIS – Cohort Event Notification Report
MRIS – Flagging Current Status Report
Under previous versions of this agreement, CLS has benefited from the use of NHS Digital data to assist with maximising participation in Age Surveys. Therefore, a further wave of list cleaning exercises was requested, i.e. this agreement, to try and find updated addresses for those who are found during fieldwork to have moved from the address held. This will further boost the number who can be contacted and invited to participate. Multiple list cleans have been requested for the purpose of tracing address details of participants over the period leading up to the Age 50 survey. Distribution of study materials, annual courtesy letters and pilot studies planned for the 2019-2020 period would benefit from the most up to date contact information for participants, thus an additional list clean is required.
UCL’s legal bases for processing the data under General Data Protection Regulation is bases under Article 6(1)(e) ‘processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller’ & Article 9(2)(j) ‘processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject’.
Aggregated data with small numbers suppressed will be made available to the research community in late 2019, forming an invaluable resource for health research. Researchers will be able to use the rich life-history data collected over the duration of the study’s life in conjunction with the data collected in the BCS70 Age 46 survey to examine the longitudinal predictors of health in mid-life. It is then planned that the measures conducted will be repeated in future sweeps of the study, which will allow for research which deepens the understanding of changes in health which occur with ageing. No patient identifiable data is made available for research.
The cohort currently held by NHS Digital, totalling roughly 15,976, was calculated as an adaptation of the original participant population, excluding study members in Scotland. Of the roughly 15,976 individuals invited to participate in the BCS70 Age 50 Survey, CLS predict that researchers will have difficulty contacting a small proportion of this population for the purposes of distributing study material and invitations for participating in Age Surveys. Preparations for the previous Age Survey (46) highlighted a group of study members where contact has been lost between researchers and the study member due to out-of-date address information. These are not individuals which have informed CLS that they wish to withdraw from the study, the researchers have simply lost touch with them as they have moved home and not informed CLS. This application for the MRIS list cleaning report is for the members of the cohort lost to follow up only.
CLS have commissioned Copyprint UK Limited to distribute mailings to all participants including regular messages regarding Age Surveys and to maintain contact with the study. These tasks serve the purpose of ensuring maximum participation in each of the Age Surveys planned throughout the study. Copyprint will have access to participant demographic information and contact details in order to fulfil their obligation. This includes data which has been supplied to Copyprint directly from NHS Digital's dissemination and data which has been 'washed' through being updated by the data subject directly. Copyprint are not permitted to use the data for any other purpose.
University College London (UCL) are the sole Data Controller for this Agreement. All Data Processors party to this agreement are acting upon the instruction of the controller.
Expected output
The main outcome from the BCS70 Age 50 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
-Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.
-Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
-Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
-Social capital, social and political participation, attitudes and values, and religion.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Participants will also be asked to complete an online dietary questionnaire.
As mentioned above this rich dataset will be shared with the wider research community for research.
Outputs for the mortality data:
database update-The notifications of deaths and embarkations will ensure CLS doesn't waste resources sending invitations to those who have moved away. It will also prevent CLS from contacting those who have died.
Research- The pseudonymised data which will be used for research.Below is a list with some of the research that CLS intends to do using mortality data for research.
1. Document and monitor socio-economic, demographic and other inequalities in cause-specific mortality over time/across generations.
2. Understand the joint progress of morbidity and mortality and to what extent healthy life expectancy keeps pace with total life expectancy.
3. Investigate the links between mental health and cause specific mortality.
4. Investigate the links between early life circumstances, childhood characteristics/behaviour and cause-specific mortality.
Benefits reported
The Age 46 survey data is now deposited at the UK Data Archive for researchers to use . A link to the data is provided here. https//beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8547#!/details . This was a main out put in the previous versions of this DSA.
The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
A full list of the data collection elements is provided below:
45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
Blood pressure measurement
Grip strength assessment
Balance assessment
Blood sample collection
Activity monitor
Online dietary diary
Currently there have been no direct benefits to this study from processing the data under this for research as it is the first time CLS is requesting permission to use mortality data for research.
The CLS have already achieved demonstrable benefits using research and other data including adding outputs to the existing body of evidence that influences research and decision making. These demonstrable benefits have been listed in the above section and include the following:
- adding to the existing body of evidence supporting various scientific publications;
- research evidence used for government briefing papers;
- attracting media coverage to the wider issues surrounding the research.
DARS-NIC-17218-B0W9X-v5.4 22 May 2020 to 31 May 2021
- Title
- 1970 British Cohort Study - MR21
- Commercial
- No
- Sublicensing
- No
- Datasets
- 7
- Files released
- 4
Datasets: Civil Registrations of Death; Demographics; MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - List Cleaning Report; MRIS - Members and Postings Report
What changed from DARS-NIC-17218-B0W9X-v4.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
Objective for processing
[27 paragraphs unchanged] ***AMENDMENT*** This amendment in to add additional data processors who would be appointed to carry out upcoming fieldwork interviews. CLS have contracted an external supplier NatCen Social Research (the trading name of the National Centre for Social Research) to carry out the individual study members' interviews. NatCen was commissioned to run interviews with study members for the Age 50 Survey which commenced in January 2020. Fieldwork had to be paused due to the COVID19 pandemic and it is hoped that fieldwork will restart in January 2021 . NatCen have also contracted an additional Data Processor, Kantar Public, to assist with these tasks. Kantar Public was also contracted to conduct two surveys which will explore the impact of the COVID-19 pandemic on different aspects of life. These two surveys follow an initial survey conducted by CLS in May 2020. The first of the surveys to be completed by Kantar was conducted in September/October 2020 and participants could only take part online. The second will commence in January 2021 and will provide those unable to take part online with an opportunity to take part via telephone. The age 50 sweep started in January 2020 and then had to be paused due to COVID19 pandemic. In may 2020 CLS conducted a COVID19 survey (Wave 1) which explored the impact of COVID19 pandemic on different aspects of life. Kantar Public was contracted to conduct another two surveys. The first of the surveys (Wave 2) to be completed by Kantar was conducted in September/October 2020 and participants could only take part online. The second will commence in January 2021 (Wave3) and will provide those unable to take part online with an opportunity to take part via telephone. In wave 1, The aim of the survey was to collect insights into the lives of study participants including their physical and mental health and wellbeing, family and relationships, education, work, and finances during the lockdown. The questions focused mainly on how participants’ lives had changed from just before the outbreak of the pandemic in March 2020 up until their response to the survey during the height of the lockdown restrictions in May 2020. This Wave 1 data is now available from the UKDS website- https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8658 The aim of Wave 2 survey is to capture how participants’ lives have changed from Wave 1 (collected at the height of the lockdown restrictions in May 2020) until late Summer/Early Autumn 2020. The topic areas mirror closely those for Wave 1, with additional questions about: ~ Health care ~ Financial transfers ~ Life events ~ Children’s schooling in summer and autumn term The full Wave 2 questionnaire is available here: https://cls.ucl.ac.uk/wp-content/uploads/2017/02/UCL-Centre-for-Longitudinal-Studies-COVID-19-Online-Survey-Questionnaire-Wave-2-Sept-2020.pdf Once the data is available and ready, Wave 2 and 3 data will also be made available for researchers to use via the UKDS.
Processing activities
[39 paragraphs unchanged] ***AMENDMENT (as per processing activities carried out by Copyprint UK Limited). In order to conduct the age 50 survey Natcen and Kantar will be supplied with sample files which will include contact details (names, addresses, telephone numbers and email addresses) for participants. These sample files will include addresses which have been provided by NHS Digital. The sample file will include information for all study members with a confirmed address AND those addresses supplied by NHS Digital which were neither confirmed nor returned to sender. In some occasions addresses with a 'returned to sender’ flag will also be sent to NatCen depending on cohort member previous participation. NatCen will send a letter to all study members on behalf of CLS, which will invite them to participate in the forthcoming survey and will let study members know that an interviewer from NatCen or from Kantar Public will be making contact with them soon. NatCen will allocate half of the study members to be contacted and interviewed by Kantar Public interviewers. NatCen will send the names and addresses to these cases to Kantar Public in order that they can allocate study members to their interviewers. NatCen interviewers and Kantar Public interviewers will both gain access to the names and addresses via NatCen systems. Kantar Public interviewers will access NatCen systems via a Virtual Machine Network. At the end of each interview, names, addresses and other contact details will be confirmed or updated on NatCen systems prior to being returned to CLS. All personal information will then be destroyed by NatCen on completion of their contract. Kantar Public do not hold any data on their own systems. Access to NHS data by Kantar Public is strictly through a Virtual Machine Network used to look up participant data. It is these obligations that define both NatCen and Kantar Public as Data Processors as they will be processing NHS Digital data without CLS replacing the information on their database using details confirmed by the data subject directly. Kantar Public will also use participant's contact details (names, addresses, telephone numbers and email addresses) provided by NHS digital to CLS, to carry out the COVID19 surveys. Please note that the sample file for the first COVID-19 survey to be conducted by Kantar Public did not include any addresses provided by NHS Digital but we hope to be able to supply these addresses in the sample file for the next survey. Interviewers working for Kantar Public will gain access to the names and addresses via their systems. At the end of each interview names, addresses and other contact details will be confirmed or updated on Kantar systems prior to being returned to CLS. All personal information provided to, or collected by the fieldwork agencies will then be destroyed on completion of their contracts.
Expected output
The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
A full list of the data collection elements is provided below:
45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
Blood pressure measurement
Grip strength assessment
Balance assessment
Blood sample collection
Activity monitor
Online dietary diary
The data will be available for researchers to access via the UK Data Service from October 2019, providing an important resource for UK Social Science, including researchers in health and social care.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking,
diet, exercise), cognitive function.
Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
Social capital, social and political participation, attitudes and values, and religion.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Participants will also be asked to complete an online dietary questionnaire.
The data will be available for researchers to access via the UK Data Service from early 2023.
Outputs for the List Clean:
[1 paragraph unchanged]
CLS has previously made outputs from the study available for researchers via the UK Data Service. This data is presented as aggregated with small numbers suppressed and consists of data collated during Age Surveys by interviewers. Outputs will not include data provided by NHS Digital.
The Age 46 Sweep involved many data collection elements which contribute to outputs, a full list of which is provided below:
• 45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
• Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
• Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
• Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
• Blood pressure measurement
• Grip strength assessment
• Balance assessment
• Blood sample collection
• Activity monitor
• Online dietary diary
Data from the Age 46 Sweep will be made available for researchers to access via the UK Data Service from October 2019, providing an important resource for UK Social Science, including researchers in health and social care.
• The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will collect data on different factors of participant functioning and socio-economic factors:
• Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking,
• diet, exercise), cognitive function.
• Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
• Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
• Social capital, social and political participation, attitudes and values, and religion.
The data will be used to produce outputs at the same level as produced from the Age 46 Sweep and will be available for researchers to access via the UK Data Service from early 2023.
The BCS70 study has seen interest from a large number of research groups, where CLS outputs have been referenced in research publications addressing a large scope of areas within health and social care. A list of the publications referencing the study can be found at the link below:
https://www.bibliography.cls.ucl.ac.uk/Bibliography.aspx?sitesectionid=647&sitesectiontitle=Bibliography
Outputs for the use of NHS Digital data:
[1 paragraph unchanged]
The expected outcome of processing this data is a more accurate database of participant demographics information, available to CLS and the appointed Data Processors in identifiable form in order to effectively contact participants and maximise the participant rate in regular surveys.
Expected measurable benefits
[3 paragraphs unchanged]
Since 1970 information has been gathered from the cohort on nine previous
[47 words unchanged]
at ages 23, 33, 42, 44, 46, 50 and 55. The age
46
study is currently in the
field and is expected to end in the summer of 2018.
field.
Future sweeps of the study are planned to take place every five years.
[6 paragraphs unchanged]
***Amendment
CLS moved very quickly during the UK's lockdown to capture time-critical aspects of people's experiences of the COVID19 pandemic. CLS's aim was to help understand the economic, social and health impacts of the COVID19 crisis. CLS's studies, including BCS70 are an especially valuable resource for understanding the lifelong factors which shape vulnerability and resilience to the pandemic's effects. The data collected by the COVID19 surveys is now available for download at the UKDS. The data will be used extensively by researchers in the UK and elsewhere and has the potential to impact on policy.
Benefits reported
[26 paragraphs unchanged] *** Amendment Henderson, M., Fitzsimons, E., Ploubidis, G., Richards, M., and Patalay, P. (2020) Mental health during lockdown: evidence from four generations - Initial findings from the COVID-19 Survey in Five National Longitudinal Studies. London: UCL Centre for Longitudinal Studies. IMPACT: Research on the impact of COVID 19 highlighted the large mental health differences across generations, with young people, specially women aged 19 and 30, at the greatest risk of depression, anxiety, loneliness and low life satisfaction. Looking at change is a key benefit of a longitudinal study. CLS researchers found that young women (aged 30) showed the biggest increase in mental health problems since they were previously assessed some years before compared to middle-aged (aged 50) and older adults (aged 62). While this change in mental health will reflect change that may naturally occur at this stage of life, as well as change attributable to the pandemic, this finding chimes with other studies which have also shown that young women have experienced the largest increase in mental health problems due to COVID-19. Detailed information about the study can be found via the link below. https://cls.ucl.ac.uk/wp-content/uploads/2017/02/Mental-health-during-lockdown-%E2%80%93-initial-findings-from-COVID-19-survey-1.pdf
Objective for processing
Background
The British Cohort Study 1970 (BCS) is one of Britain’s world renowned national longitudinal birth cohort studies. It follows a large sample of individuals born over a limited period of time (all those born in one week in 1970) through the course of their lives, charting the effects of events and circumstances in early life on outcomes and achievements later on. They show how histories of health, wealth, education, family and employment are interwoven for individuals and vary between them.
The study is run by the Centre for Longitudinal Studies (CLS) at the University of London, and funded by the Economic and Social Research Council.
Since 1970 there have been nine attempts to gather information from the whole cohort. Over time, the scope of enquiry has broadened from a medical focus at birth, to encompass physical and educational development at the age of five, physical, educational and social development at the ages of ten and sixteen, and then to include economic development and other wider factors at ages 26, 30, 34, 38 and 42. The most recent survey was Age 46 and future sweeps surveys will take place roughly every 5 years. The ongoing success of the study depends on maintaining contact with as many study members as possible especially during interim periods between surveys.
The study has its origins in the British Births Survey in which information was gathered about almost 17,500 babies. The original study focused on the circumstances and outcomes of birth but since then the study has broadened in scope to map all aspects of health, education, social and economic development. The current survey will provide an updated picture of the circumstances and experiences of those born in the early seventies in England, Scotland and Wales and will help develop an understanding of their progress into the latter period of their lives.
The most recent Age 46 survey began in July 2016 and was scheduled to run until July 2018. As of the beginning of February 2018, data had been collected from just over 6,000 participants and by completion it was projected that approximately 8,500 will have taken part. The Age 46 Survey had a particular focus on health and was conducted by interviewers and registered nurses. The survey involved an interview, anthropometric measurements, blood pressure assessment, measures of physical functioning (grip strength and balance assessments) and the collection of blood samples (for immediate analysis of cholesterol and glycated haemoglobin, storage for future analysis and future DNA extraction). In addition, participants were asked to wear a device which measured physical activity levels for 7 days and to complete an online questionnaire about their diet. The objective measures of health had been funded by the Medical Research Council and the British Heart Foundation.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.
Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood, Social capital, social and political participation, attitudes and values, and religion.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Aim
The ongoing success of the study depends on maintaining contact with as many study participants as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for the study members whose whereabouts are currently unknown. CLS believe that a substantial number of these individuals would be willing to participate in the Age 50 survey if they could be contacted. Previous efforts to re-establish contact for the BCS70 cohort study have been very successful using this route.
CLS wish to access NHS Digital data for the purpose of updating participant demographic data held on CLS systems for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study. CLS also requests access to mortality data included within the reports outlined below to be used in the process of contacting participants involved in previous sweeps.
Data Summary
CLS are requesting access to record level, identifiable data linked to the cohort from the following Medical Research reports:
MRIS – Cause of Death Report
MRIS - List Cleaning Report
MRIS Members and Postings Report
MRIS – Cohort Event Notification Report
MRIS – Flagging Current Status Report
Under previous versions of this agreement, CLS has benefited from the use of NHS Digital data to assist with maximising participation in Age Surveys. Therefore, a further wave of list cleaning exercises was requested, i.e. this agreement, to try and find updated addresses for those who are found during fieldwork to have moved from the address held. This will further boost the number who can be contacted and invited to participate. Multiple list cleans have been requested for the purpose of tracing address details of participants over the period leading up to the Age 50 survey. Distribution of study materials, annual courtesy letters and pilot studies planned for the 2019-2020 period would benefit from the most up to date contact information for participants, thus an additional list clean is required.
UCL’s legal bases for processing the data under General Data Protection Regulation is bases under Article 6(1)(e) ‘processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller’ & Article 9(2)(j) ‘processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject’.
Aggregated data with small numbers suppressed will be made available to the research community in late 2019, forming an invaluable resource for health research. Researchers will be able to use the rich life-history data collected over the duration of the study’s life in conjunction with the data collected in the BCS70 Age 46 survey to examine the longitudinal predictors of health in mid-life. It is then planned that the measures conducted will be repeated in future sweeps of the study, which will allow for research which deepens the understanding of changes in health which occur with ageing. No patient identifiable data is made available for research.
The cohort currently held by NHS Digital, totalling roughly 15,976, was calculated as an adaptation of the original participant population, excluding study members in Scotland. Of the roughly 15,976 individuals invited to participate in the BCS70 Age 50 Survey, CLS predict that researchers will have difficulty contacting a small proportion of this population for the purposes of distributing study material and invitations for participating in Age Surveys. Preparations for the previous Age Survey (46) highlighted a group of study members where contact has been lost between researchers and the study member due to out-of-date address information. These are not individuals which have informed CLS that they wish to withdraw from the study, the researchers have simply lost touch with them as they have moved home and not informed CLS. This application for the MRIS list cleaning report is for the members of the cohort lost to follow up only.
CLS have commissioned Copyprint UK Limited to distribute mailings to all participants including regular messages regarding Age Surveys and to maintain contact with the study. These tasks serve the purpose of ensuring maximum participation in each of the Age Surveys planned throughout the study. Copyprint will have access to participant demographic information and contact details in order to fulfil their obligation. This includes data which has been supplied to Copyprint directly from NHS Digital's dissemination and data which has been 'washed' through being updated by the data subject directly. Copyprint are not permitted to use the data for any other purpose.
University College London (UCL) are the sole Data Controller for this agreement. All Data Processors party to this agreement are acting upon the instruction of the controller.
***AMENDMENT***
This amendment in to add additional data processors who would be appointed to carry out upcoming fieldwork interviews. CLS have contracted an external supplier NatCen Social Research (the trading name of the National Centre for Social Research) to carry out the individual study members' interviews. NatCen was commissioned to run interviews with study members for the Age 50 Survey which commenced in January 2020. Fieldwork had to be paused due to the COVID19 pandemic and it is hoped that fieldwork will restart in January 2021 . NatCen have also contracted an additional Data Processor, Kantar Public, to assist with these tasks.
Kantar Public was also contracted to conduct two surveys which will explore the impact of the COVID-19 pandemic on different aspects of life. These two surveys follow an initial survey conducted by CLS in May 2020. The first of the surveys to be completed by Kantar was conducted in September/October 2020 and participants could only take part online. The second will commence in January 2021 and will provide those unable to take part online with an opportunity to take part via telephone.
The age 50 sweep started in January 2020 and then had to be paused due to COVID19 pandemic.
In may 2020 CLS conducted a COVID19 survey (Wave 1) which explored the impact of COVID19 pandemic on different aspects of life. Kantar Public was contracted to conduct another two surveys. The first of the surveys (Wave 2) to be completed by Kantar was conducted in September/October 2020 and participants could only take part online. The second will commence in January 2021 (Wave3) and will provide those unable to take part online with an opportunity to take part via telephone.
In wave 1, The aim of the survey was to collect insights into the lives of study participants including their physical and mental health and wellbeing, family and relationships, education, work, and finances during the lockdown. The questions focused mainly on how participants’ lives had changed from just before the outbreak of the pandemic in March 2020 up until their response to the survey during the height of the lockdown restrictions in May 2020. This Wave 1 data is now available from the UKDS website- https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8658
The aim of Wave 2 survey is to capture how participants’ lives have changed from Wave 1 (collected at the height of the lockdown restrictions in May 2020) until late Summer/Early Autumn 2020. The topic areas mirror closely those for Wave 1, with additional questions about:
~ Health care
~ Financial transfers
~ Life events
~ Children’s schooling in summer and autumn term
The full Wave 2 questionnaire is available here:
https://cls.ucl.ac.uk/wp-content/uploads/2017/02/UCL-Centre-for-Longitudinal-Studies-COVID-19-Online-Survey-Questionnaire-Wave-2-Sept-2020.pdf
Once the data is available and ready, Wave 2 and 3 data will also be made available for researchers to use via the UKDS.
Expected output
The Age 46 Sweep involved many data collection elements, including a full range of bio-measures administered by a nurse. The inclusion of objective measures of health will allow researchers to assess the longitudinal predictors of health in mid-life. Many of the measures were included in our other study the NCDS age 44 biomedical sweep, which will allow for cross-cohort comparisons.
A full list of the data collection elements is provided below:
45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
Blood pressure measurement
Grip strength assessment
Balance assessment
Blood sample collection
Activity monitor
Online dietary diary
The data will be available for researchers to access via the UK Data Service from October 2019, providing an important resource for UK Social Science, including researchers in health and social care.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking,
diet, exercise), cognitive function.
Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
Social capital, social and political participation, attitudes and values, and religion.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Participants will also be asked to complete an online dietary questionnaire.
The data will be available for researchers to access via the UK Data Service from early 2023.
Outputs for the List Clean:
The main outcome from the BCS70 Age 50 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
The addresses previously obtained from NHS Digital were used to invite study members to take part in the BCS70 Age 46 survey and they will be used to invite study members to take part in the future sweep age 50 taking place in 2020. The previous application requested an extension to the current agreement to keep the data we currently hold and to carry out another 2 list cleans in preparation for age 50, and to receive notifications of deaths and embarkations biannually.
Benefits reported
There have been hundreds of published journal articles, books, chapters, reports or conference presentations based on data from the 1970 British Cohort Study.
Below are some examples of existing publications using BCS70 data benefiting public health:
• TAYLOR, B and WADSWORTH, J. (1987) Maternal smoking during pregnancy and lower respiratory tract illness in early life. Archives of Disease in Childhood, 62(8), 786-791.
IMPACT: Research from BCS70 has contributed to the understanding of the effects of maternal smoking on child health.
SUMMARY: In a national study of 12,743 children maternal, but not paternal, smoking was confirmed as having a significant influence on the reported incidence of bronchitis and admission to hospital for lower respiratory tract illness during the first five years of life. Reported rates of admissions to hospital for lower respiratory tract diseases were found to be as high in children born to mothers who stopped smoking during pregnancy as in those whose mothers smoked continuously both during and after pregnancy. Rates of admissions to hospital for lower respiratory tract diseases in children whose mothers started smoking only postnatally were no higher than in those whose mothers remained non-smokers. Postnatal smoking seemed to exert a significant influence on the reported incidence of bronchitis, but less than smoking during pregnancy. These findings suggest that maternal smoking influences the incidence of respiratory illnesses in children mainly through a congenital effect, and only to a lesser extent through passive exposure after birth.
• MARMOT, M and BELL, R. (2016) Social inequalities in health: a proper concern of epidemiology. Annals of Epidemiology, 26(4), 238-240.
IMPACT: Research using BCS70 has highlighted an interrogated socio-economic inequalities in health.
Abstract: Social inequalities are a proper concern of epidemiology. Epidemiological thinking and modes of analysis are central, but epidemiological research is one among many areas of study that provide the evidence for understanding the causes of social inequalities in health and what can be done to reduce them. Understanding the causes of health inequalities requires insights from social, behavioural and biological sciences, and a chain of reasoning that examines how the accumulation of positive and negative influences over the life course leads to health inequalities in adult life. Evidence that the social gradient in health can be reduced should make us optimistic that reducing health inequalities is a realistic goal for all societies.
• PLOUBIDIS, G.B, SULLIVAN, A, BROWN, M and GOODMAN, A. (2017) Psychological Distress in Mid-Life: Evidence from the 1958 and 1970 British Birth Cohorts. Psychological Medicine, 47(2), 291-303.
IMPACT: Research using BCS70 has highlighted the growing problem of depression in the UK.
Abstract: This paper addresses the levels of psychological distress experienced at age 42 years by men and women born in 1958 and 1970. Comparing these cohorts born 12 years apart, we ask whether psychological distress has increased, and, if so, whether this increase can be explained by differences in their childhood conditions. Data were utilized from two well-known population-based birth cohorts, the National Child Development Study and the 1970 British Cohort Study. Latent variable models and causal mediation methods were employed. After establishing the measurement equivalence of psychological distress in the two cohorts we found that men and women born in 1970 reported higher levels of psychological distress compared with those born in 1958. These differences were more pronounced in men (b = 0.314, 95% confidence interval 0.252–0.375), with the magnitude of the effect being twice as strong compared with women (b = 0.147, 95% confidence interval 0.076–0.218). The effect of all hypothesized early-life mediators in explaining these differences was modest. Our findings have implications for public health policy, indicating a higher average level of psychological distress among a cohort born in 1970 compared with a generation born 12 years earlier. Due to increases in life expectancy, more recently born cohorts are expected to live longer, which implies – if such differences persist – that they are likely to spend more years with mental health-related morbidity compared with earlier-born cohorts.
• V.P. Mateia, A.I. Mihăilescub, L.V. Diaconescuc, T. Purnichid, R. Grigorașe, O. Popa-Veleac (2018) Depression in young adults diagnosed with cancer – an analysis of the outcomes of 1970 British Cohort Study.
IMPACT: Research using BCS70 Cohort Study data has contributed to the understanding of the risk of depression in young patients diagnosed with cancer.
Summary
The study found that the risk of depression is higher at people with onset of cancer before 30. The study did not identify an increased risk for depression by socioeconomic status. Instead, they suggest the importance of active screening and treatment of depression at young patients with cancer.
Detailed information about the study can be found here https://www.sciencedirect.com/science/article/pii/S0022399918303088?via%3Dihub
BANN, D, JOHNSON, W, LI, L, KUH, D and HARDY, R. (2018) Socioeconomic inequalities in childhood and adolescent body-mass index, weight, and height from 1953 to 2015: an analysis of four longitudinal, observational, British birth cohort studies. Lancet Public Health, 3(4), e194-e203.
IMPACT: Research using BCS70 Cohort Study data has contributed to the understanding of how socioeconomic inequalities in childhood body-mass index (BMI) have been documented in high-income countries, how they have changed over time, how inequalities in the composite parts (ie, weight and height) of BMI have changed, and whether inequalities differ in magnitude across the outcome distribution. The study investigated how socioeconomic inequalities in childhood and adolescent weight, height, and BMI have changed over time in Britain.
Detailed information about the study can be found here https://www.sciencedirect.com/science/article/pii/S2468266718300458?via%3Dihub
CHENG, H and FURNHAM, A. (2018) Teenage locus of control, psychological distress, educational qualifications and occupational prestige as well as sex are independent predictors of adult binge drinking. Alcohol, advance online access, 1 Sept 2018.
IMPACT : Research using BCS70 Cohort Study data has contributed to the understanding of how various psychological and socio-demographic factors in childhood and adulthood that relate to alcohol intake and binge drinking at age 42 years.
abstract:
Data were drawn from the 1970 British Cohort Study (BCS70), The analytic sample comprised 5267 cohort members with data on parental social class at birth, cognitive ability at age 10, locus of control at age 16, psychological distress at age 30, educational qualifications at age 34, and current occupation and alcohol consumption at age 42 years. Results showed that sex (male), lower parental social class, adolescent external locus of control, psychological distress, lower scores on childhood intelligence, lower educational qualifications and less professional occupations were all significantly and positively associated with binge drinking in adulthood. Both psychological and social factors influence adult excessive alcohol consumption. Adolescent locus of control beliefs had a modest but significant effect on adult binge drinking 26 years later.
detailed information can be found here:
https://www.sciencedirect.com/science/article/pii/S0741832916301677?via%3Dihub
For more information about published work using this study access cls.ucl.ac.uk
*** Amendment
Henderson, M., Fitzsimons, E., Ploubidis, G., Richards, M., and Patalay, P. (2020) Mental health during lockdown: evidence from four generations - Initial findings from the COVID-19 Survey in Five National Longitudinal Studies. London: UCL Centre for Longitudinal Studies.
IMPACT: Research on the impact of COVID 19 highlighted the large mental health differences across generations, with young people, specially women aged 19 and 30, at the greatest risk of depression, anxiety, loneliness and low life satisfaction.
Looking at change is a key benefit of a longitudinal study. CLS researchers found that young women (aged 30) showed the biggest increase in mental health problems since they were previously assessed some years before compared to middle-aged (aged 50) and older adults (aged 62). While this change in mental health will reflect change that may naturally occur at this stage of life, as well as change attributable to the pandemic, this finding chimes with other studies which have also shown that young women have experienced the largest increase in mental health problems due to COVID-19.
Detailed information about the study can be found via the link below.
https://cls.ucl.ac.uk/wp-content/uploads/2017/02/Mental-health-during-lockdown-%E2%80%93-initial-findings-from-COVID-19-survey-1.pdf
DARS-NIC-17218-B0W9X-v4.2 22 May 2020 to 31 May 2021
- Title
- 1970 British Cohort Study - MR21
- Commercial
- No
- Sublicensing
- No
- Datasets
- 7
- Files released
- 3
Datasets: Civil Registrations of Death; Demographics; MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - List Cleaning Report; MRIS - Members and Postings Report
What changed from DARS-NIC-17218-B0W9X-v3.6
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2020-05-22 |
Datasets: + Civil Registrations of Death; + Demographics
Unchanged: Objective for processing, Processing activities, Expected output, Expected measurable benefits, Benefits reported.
Objective for processing
Background
The British Cohort Study 1970 (BCS) is one of Britain’s world renowned national longitudinal birth cohort studies. It follows a large sample of individuals born over a limited period of time (all those born in one week in 1970) through the course of their lives, charting the effects of events and circumstances in early life on outcomes and achievements later on. They show how histories of health, wealth, education, family and employment are interwoven for individuals and vary between them.
The study is run by the Centre for Longitudinal Studies (CLS) at the University of London, and funded by the Economic and Social Research Council.
Since 1970 there have been nine attempts to gather information from the whole cohort. Over time, the scope of enquiry has broadened from a medical focus at birth, to encompass physical and educational development at the age of five, physical, educational and social development at the ages of ten and sixteen, and then to include economic development and other wider factors at ages 26, 30, 34, 38 and 42. The most recent survey was Age 46 and future sweeps surveys will take place roughly every 5 years. The ongoing success of the study depends on maintaining contact with as many study members as possible especially during interim periods between surveys.
The study has its origins in the British Births Survey in which information was gathered about almost 17,500 babies. The original study focused on the circumstances and outcomes of birth but since then the study has broadened in scope to map all aspects of health, education, social and economic development. The current survey will provide an updated picture of the circumstances and experiences of those born in the early seventies in England, Scotland and Wales and will help develop an understanding of their progress into the latter period of their lives.
The most recent Age 46 survey began in July 2016 and was scheduled to run until July 2018. As of the beginning of February 2018, data had been collected from just over 6,000 participants and by completion it was projected that approximately 8,500 will have taken part. The Age 46 Survey had a particular focus on health and was conducted by interviewers and registered nurses. The survey involved an interview, anthropometric measurements, blood pressure assessment, measures of physical functioning (grip strength and balance assessments) and the collection of blood samples (for immediate analysis of cholesterol and glycated haemoglobin, storage for future analysis and future DNA extraction). In addition, participants were asked to wear a device which measured physical activity levels for 7 days and to complete an online questionnaire about their diet. The objective measures of health had been funded by the Medical Research Council and the British Heart Foundation.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.
Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood, Social capital, social and political participation, attitudes and values, and religion.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Aim
The ongoing success of the study depends on maintaining contact with as many study participants as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for the study members whose whereabouts are currently unknown. CLS believe that a substantial number of these individuals would be willing to participate in the Age 50 survey if they could be contacted. Previous efforts to re-establish contact for the BCS70 cohort study have been very successful using this route.
CLS wish to access NHS Digital data for the purpose of updating participant demographic data held on CLS systems for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study. CLS also requests access to mortality data included within the reports outlined below to be used in the process of contacting participants involved in previous sweeps.
Data Summary
CLS are requesting access to record level, identifiable data linked to the cohort from the following Medical Research reports:
MRIS – Cause of Death Report
MRIS - List Cleaning Report
MRIS Members and Postings Report
MRIS – Cohort Event Notification Report
MRIS – Flagging Current Status Report
Under previous versions of this agreement, CLS has benefited from the use of NHS Digital data to assist with maximising participation in Age Surveys. Therefore, a further wave of list cleaning exercises was requested, i.e. this agreement, to try and find updated addresses for those who are found during fieldwork to have moved from the address held. This will further boost the number who can be contacted and invited to participate. Multiple list cleans have been requested for the purpose of tracing address details of participants over the period leading up to the Age 50 survey. Distribution of study materials, annual courtesy letters and pilot studies planned for the 2019-2020 period would benefit from the most up to date contact information for participants, thus an additional list clean is required.
UCL’s legal bases for processing the data under General Data Protection Regulation is bases under Article 6(1)(e) ‘processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller’ & Article 9(2)(j) ‘processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject’.
Aggregated data with small numbers suppressed will be made available to the research community in late 2019, forming an invaluable resource for health research. Researchers will be able to use the rich life-history data collected over the duration of the study’s life in conjunction with the data collected in the BCS70 Age 46 survey to examine the longitudinal predictors of health in mid-life. It is then planned that the measures conducted will be repeated in future sweeps of the study, which will allow for research which deepens the understanding of changes in health which occur with ageing. No patient identifiable data is made available for research.
The cohort currently held by NHS Digital, totalling roughly 15,976, was calculated as an adaptation of the original participant population, excluding study members in Scotland. Of the roughly 15,976 individuals invited to participate in the BCS70 Age 50 Survey, CLS predict that researchers will have difficulty contacting a small proportion of this population for the purposes of distributing study material and invitations for participating in Age Surveys. Preparations for the previous Age Survey (46) highlighted a group of study members where contact has been lost between researchers and the study member due to out-of-date address information. These are not individuals which have informed CLS that they wish to withdraw from the study, the researchers have simply lost touch with them as they have moved home and not informed CLS. This application for the MRIS list cleaning report is for the members of the cohort lost to follow up only.
CLS have commissioned Copyprint UK Limited to distribute mailings to all participants including regular messages regarding Age Surveys and to maintain contact with the study. These tasks serve the purpose of ensuring maximum participation in each of the Age Surveys planned throughout the study. Copyprint will have access to participant demographic information and contact details in order to fulfil their obligation. This includes data which has been supplied to Copyprint directly from NHS Digital's dissemination and data which has been 'washed' through being updated by the data subject directly. Copyprint are not permitted to use the data for any other purpose.
University College London (UCL) are the sole Data Controller for this agreement. All Data Processors party to this agreement are acting upon the instruction of the controller.
Expected output
The main outcome from the BCS70 Age 50 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
CLS has previously made outputs from the study available for researchers via the UK Data Service. This data is presented as aggregated with small numbers suppressed and consists of data collated during Age Surveys by interviewers. Outputs will not include data provided by NHS Digital.
The Age 46 Sweep involved many data collection elements which contribute to outputs, a full list of which is provided below:
• 45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
• Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
• Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
• Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
• Blood pressure measurement
• Grip strength assessment
• Balance assessment
• Blood sample collection
• Activity monitor
• Online dietary diary
Data from the Age 46 Sweep will be made available for researchers to access via the UK Data Service from October 2019, providing an important resource for UK Social Science, including researchers in health and social care.
• The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will collect data on different factors of participant functioning and socio-economic factors:
• Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking,
• diet, exercise), cognitive function.
• Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
• Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
• Social capital, social and political participation, attitudes and values, and religion.
The data will be used to produce outputs at the same level as produced from the Age 46 Sweep and will be available for researchers to access via the UK Data Service from early 2023.
The BCS70 study has seen interest from a large number of research groups, where CLS outputs have been referenced in research publications addressing a large scope of areas within health and social care. A list of the publications referencing the study can be found at the link below:
https://www.bibliography.cls.ucl.ac.uk/Bibliography.aspx?sitesectionid=647&sitesectiontitle=Bibliography
Outputs for the use of NHS Digital data:
The addresses previously obtained from NHS Digital were used to invite study members to take part in the BCS70 Age 46 survey and they will be used to invite study members to take part in the future sweep age 50 taking place in 2020. The previous application requested an extension to the current agreement to keep the data we currently hold and to carry out another 2 list cleans in preparation for age 50, and to receive notifications of deaths and embarkations biannually.
The expected outcome of processing this data is a more accurate database of participant demographics information, available to CLS and the appointed Data Processors in identifiable form in order to effectively contact participants and maximise the participant rate in regular surveys.
Benefits reported
There have been hundreds of published journal articles, books, chapters, reports or conference presentations based on data from the 1970 British Cohort Study.
Below are some examples of existing publications using BCS70 data benefiting public health:
• TAYLOR, B and WADSWORTH, J. (1987) Maternal smoking during pregnancy and lower respiratory tract illness in early life. Archives of Disease in Childhood, 62(8), 786-791.
IMPACT: Research from BCS70 has contributed to the understanding of the effects of maternal smoking on child health.
SUMMARY: In a national study of 12,743 children maternal, but not paternal, smoking was confirmed as having a significant influence on the reported incidence of bronchitis and admission to hospital for lower respiratory tract illness during the first five years of life. Reported rates of admissions to hospital for lower respiratory tract diseases were found to be as high in children born to mothers who stopped smoking during pregnancy as in those whose mothers smoked continuously both during and after pregnancy. Rates of admissions to hospital for lower respiratory tract diseases in children whose mothers started smoking only postnatally were no higher than in those whose mothers remained non-smokers. Postnatal smoking seemed to exert a significant influence on the reported incidence of bronchitis, but less than smoking during pregnancy. These findings suggest that maternal smoking influences the incidence of respiratory illnesses in children mainly through a congenital effect, and only to a lesser extent through passive exposure after birth.
• MARMOT, M and BELL, R. (2016) Social inequalities in health: a proper concern of epidemiology. Annals of Epidemiology, 26(4), 238-240.
IMPACT: Research using BCS70 has highlighted an interrogated socio-economic inequalities in health.
Abstract: Social inequalities are a proper concern of epidemiology. Epidemiological thinking and modes of analysis are central, but epidemiological research is one among many areas of study that provide the evidence for understanding the causes of social inequalities in health and what can be done to reduce them. Understanding the causes of health inequalities requires insights from social, behavioural and biological sciences, and a chain of reasoning that examines how the accumulation of positive and negative influences over the life course leads to health inequalities in adult life. Evidence that the social gradient in health can be reduced should make us optimistic that reducing health inequalities is a realistic goal for all societies.
• PLOUBIDIS, G.B, SULLIVAN, A, BROWN, M and GOODMAN, A. (2017) Psychological Distress in Mid-Life: Evidence from the 1958 and 1970 British Birth Cohorts. Psychological Medicine, 47(2), 291-303.
IMPACT: Research using BCS70 has highlighted the growing problem of depression in the UK.
Abstract: This paper addresses the levels of psychological distress experienced at age 42 years by men and women born in 1958 and 1970. Comparing these cohorts born 12 years apart, we ask whether psychological distress has increased, and, if so, whether this increase can be explained by differences in their childhood conditions. Data were utilized from two well-known population-based birth cohorts, the National Child Development Study and the 1970 British Cohort Study. Latent variable models and causal mediation methods were employed. After establishing the measurement equivalence of psychological distress in the two cohorts we found that men and women born in 1970 reported higher levels of psychological distress compared with those born in 1958. These differences were more pronounced in men (b = 0.314, 95% confidence interval 0.252–0.375), with the magnitude of the effect being twice as strong compared with women (b = 0.147, 95% confidence interval 0.076–0.218). The effect of all hypothesized early-life mediators in explaining these differences was modest. Our findings have implications for public health policy, indicating a higher average level of psychological distress among a cohort born in 1970 compared with a generation born 12 years earlier. Due to increases in life expectancy, more recently born cohorts are expected to live longer, which implies – if such differences persist – that they are likely to spend more years with mental health-related morbidity compared with earlier-born cohorts.
• V.P. Mateia, A.I. Mihăilescub, L.V. Diaconescuc, T. Purnichid, R. Grigorașe, O. Popa-Veleac (2018) Depression in young adults diagnosed with cancer – an analysis of the outcomes of 1970 British Cohort Study.
IMPACT: Research using BCS70 Cohort Study data has contributed to the understanding of the risk of depression in young patients diagnosed with cancer.
Summary
The study found that the risk of depression is higher at people with onset of cancer before 30. The study did not identify an increased risk for depression by socioeconomic status. Instead, they suggest the importance of active screening and treatment of depression at young patients with cancer.
Detailed information about the study can be found here https://www.sciencedirect.com/science/article/pii/S0022399918303088?via%3Dihub
BANN, D, JOHNSON, W, LI, L, KUH, D and HARDY, R. (2018) Socioeconomic inequalities in childhood and adolescent body-mass index, weight, and height from 1953 to 2015: an analysis of four longitudinal, observational, British birth cohort studies. Lancet Public Health, 3(4), e194-e203.
IMPACT: Research using BCS70 Cohort Study data has contributed to the understanding of how socioeconomic inequalities in childhood body-mass index (BMI) have been documented in high-income countries, how they have changed over time, how inequalities in the composite parts (ie, weight and height) of BMI have changed, and whether inequalities differ in magnitude across the outcome distribution. The study investigated how socioeconomic inequalities in childhood and adolescent weight, height, and BMI have changed over time in Britain.
Detailed information about the study can be found here https://www.sciencedirect.com/science/article/pii/S2468266718300458?via%3Dihub
CHENG, H and FURNHAM, A. (2018) Teenage locus of control, psychological distress, educational qualifications and occupational prestige as well as sex are independent predictors of adult binge drinking. Alcohol, advance online access, 1 Sept 2018.
IMPACT : Research using BCS70 Cohort Study data has contributed to the understanding of how various psychological and socio-demographic factors in childhood and adulthood that relate to alcohol intake and binge drinking at age 42 years.
abstract:
Data were drawn from the 1970 British Cohort Study (BCS70), The analytic sample comprised 5267 cohort members with data on parental social class at birth, cognitive ability at age 10, locus of control at age 16, psychological distress at age 30, educational qualifications at age 34, and current occupation and alcohol consumption at age 42 years. Results showed that sex (male), lower parental social class, adolescent external locus of control, psychological distress, lower scores on childhood intelligence, lower educational qualifications and less professional occupations were all significantly and positively associated with binge drinking in adulthood. Both psychological and social factors influence adult excessive alcohol consumption. Adolescent locus of control beliefs had a modest but significant effect on adult binge drinking 26 years later.
detailed information can be found here:
https://www.sciencedirect.com/science/article/pii/S0741832916301677?via%3Dihub
For more information about published work using this study access cls.ucl.ac.uk
DARS-NIC-17218-B0W9X-v3.6 16 March 2020 to 31 May 2021
- Title
- 1970 British Cohort Study - MR21
- Commercial
- No
- Sublicensing
- No
- Datasets
- 5
- Files released
- 4
Datasets: MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - List Cleaning Report; MRIS - Members and Postings Report
What changed from DARS-NIC-17218-B0W9X-v2.9
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2020-03-16 | |
| MRIS - Cause of Death Report: legal basis | Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| MRIS - Cohort Event Notification Report: legal basis | Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| MRIS - Flagging Current Status Report: legal basis | Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| MRIS - Flagging Current Status Report: type of data | Identifiable | |
| MRIS - List Cleaning Report: legal basis | Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| MRIS - Members and Postings Report: legal basis | Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'. |
Objective for processing
Background
[4 paragraphs unchanged]
The most recent Age 46 survey began in July 2016 and was
[27 words unchanged]
projected that approximately 8,500 will have taken part. The Age 46 Survey
has
had
a particular focus on health and was conducted by interviewers and registered
[33 words unchanged]
haemoglobin, storage for future analysis and future DNA extraction). In addition, participants
are
were
asked to wear a device which
measures
measured
physical activity levels for 7 days and to complete an online questionnaire
[9 words unchanged]
been funded by the Medical Research Council and the British Heart Foundation.
For the BCS70 Age 46 survey, CLS contracted an external supplier NatCen Social Research (the trading name of the National Centre for Social Research) to carry out the individual study members’ interviews. For the Age 50 Survey, CLS will be appointing a new contractor to assist with the pilot studies planned for the 2019-2020 period prior to the Age 50 Survey.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
The record-level pseudonymised research data will be deposited at the UK Data Service. Aggregated data with small numbers suppressed will be made available to the research community in late 2019, forming an invaluable resource for health research. Researchers will be able to use the rich life-history data collected over the duration of the study’s life in conjunction with the data collected in the BCS70 Age 46 survey to examine the longitudinal predictors of health in mid-life. It is then planned that the measures conducted will be repeated in future sweeps of the study, which will allow for research which deepens the understanding of changes in health which occur with ageing. No patient identifiable data is made available for research.
Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.
Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood, Social capital, social and political participation, attitudes and values, and religion.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Aim
The ongoing success of the study depends on maintaining contact with as many study participants as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for the study members whose whereabouts are currently unknown. CLS believe that a substantial number of these individuals would be willing to participate in the Age 50 survey if they could be contacted. Previous efforts to re-establish contact for the BCS70 cohort study have been very successful using this route.
CLS wish to access NHS Digital data for the purpose of updating participant demographic data held on CLS systems for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study. CLS also requests access to mortality data included within the reports outlined below to be used in the process of contacting participants involved in previous sweeps.
Data Summary
CLS are requesting access to record level, identifiable data linked to the cohort from the following Medical Research reports:
MRIS – Cause of Death Report
MRIS - List Cleaning Report
MRIS Members and Postings Report
MRIS – Cohort Event Notification Report
MRIS – Flagging Current Status Report
Under previous versions of this agreement, CLS has benefited from the use of NHS Digital data to assist with maximising participation in Age Surveys. Therefore, a further wave of list cleaning exercises was requested, i.e. this agreement, to try and find updated addresses for those who are found during fieldwork to have moved from the address held. This will further boost the number who can be contacted and invited to participate. Multiple list cleans have been requested for the purpose of tracing address details of participants over the period leading up to the Age 50 survey. Distribution of study materials, annual courtesy letters and pilot studies planned for the 2019-2020 period would benefit from the most up to date contact information for participants, thus an additional list clean is required.
UCL’s legal bases for processing the data under General Data Protection Regulation is bases under Article 6(1)(e) ‘processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller’ & Article 9(2)(j) ‘processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject’.
Aggregated data with small numbers suppressed will be made available to the research community in late 2019, forming an invaluable resource for health research. Researchers will be able to use the rich life-history data collected over the duration of the study’s life in conjunction with the data collected in the BCS70 Age 46 survey to examine the longitudinal predictors of health in mid-life. It is then planned that the measures conducted will be repeated in future sweeps of the study, which will allow for research which deepens the understanding of changes in health which occur with ageing. No patient identifiable data is made available for research.
[1 paragraph unchanged]
The ongoing success of the study depends on maintaining contact with as large a number of study members as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for the study members whose whereabouts are currently unknown. CLS feel that a substantial number of these individuals would be willing to participate in the Age 50 survey if they could be contacted. Previous efforts to re-establish contact for our BCS70 cohort study have been very successful using this route.
[1 paragraph unchanged]
The on-going success of the study depends on maximising participation. The successful list clean exercise which took place during the previous iteration of this agreement, prior to the launch of fieldwork, allowed CLS to invite around 318 previously untraced study members to take part. Of the 1370 untraced cohort members, 1164 cases were returned by NHS Digital where 537 of these records provided CLS with updated address details. In summary, CLS were able to invite 318 participants to take part in the study where they would otherwise be unable to do so.
University College London (UCL) are the sole Data Controller for this agreement. All Data Processors party to this agreement are acting upon the instruction of the controller.
Therefore, a 2nd wave of list cleaning exercises was planned i.e. this agreement, to try and find updated addresses for those who are found during fieldwork to have moved from the address held. This will further boost the number who can be contacted and invited to participate. Multiple list cleans have been requested for the purpose of tracing address details of participants over the period leading up to the Age 50 survey. Distribution of study materials, annual courtesy letters and pilot studies planned for the 2019-2020 period would benefit from the most up to date contact information for participants, thus an additional list clean is required.
Processing activities
ACTIVITY 1.
ACTIVITY.
NHS address tracing. CLS wish to use the patient status and tracking
[21 words unchanged]
finding new address details or verifying existing address details for the cohort.
[26 paragraphs unchanged]
The data file supplied from NHS Digital, will be processed within CLS and entered into CLS’s secure confidential address database i.e. CLS will load more recent addresses into the database. CLS will use Copyprint to send correspondence to participants inviting them to re-engage with the study. Furthermore, addresses will be used by CLS to invite study members to take part in the current survey and future surveys. All BCS study members contact information is held in secure confidential address databases.
CLS will also submit 600 participants from the original file who have been matched through the Automatic Cohort Validation under DARS-NIC-17218-B0W9X-v2.9 version of this agreement for manual tracing. Other than the amendment to the matching process applied to these participants, this data flow will replicate the steps provided above.
Study members newly traced would be written to and invited to re-engage with the study. Any newly traced study members who on being contacted were to indicate that they no longer wish to participate in the study would be recorded as a 'permanent refusal' on the CLS database and not approached again.
The data file supplied by NHS Digital, will be reviewed by CLS. Where addresses supplied by NHS Digital are new or more recent than the address currently held on the CLS confidential database the new addresses will be uploaded.
All those accessing the data supplied by NHS Digital are substantive employees of University College London or employees of subcontractor organisations carrying work on behalf of UCL.
CLS will use Copyprint to send correspondence to participants inviting them to re-engage with the study. Furthermore, addresses will be used by CLS to invite study members to take part in the current survey and future surveys. All BCS study members contact information is held in secure confidential address databases.
*CLS have identified the scenarios where NHS Digital data will be processed by CLS and its Data Processors.
Study members newly traced would be written to and invited to re-engage with the study. Any study members choosing not to take part in the study are flagged on this database with a code denoting whether their refusal is temporary (i.e. for a particular wave/survey) or permanent (i.e. they wish to have no further involvement in the study). Any previously deposited anonymised survey data for a study member and confidential data from the address database are retained unless the study member specifically asks us not to, in which case this data is securely deleted.
The data file supplied from NHS Digital, will be reviewed by CLS. Where addresses supplied by NHS Digital are new or more recent than the address currently held on the CLS confidential database the new addresses will be uploaded.
With regard to a request for 'withdrawal' from a participant CLS classifies them as a 'withdrawal from the current survey' or a 'withdrawal from the study' and these are handled slightly differently:
CLS will write to all newly traced cohort members at the addresses that are supplied by NHS Digital – and will ask them to confirm their address by return of a reply slip, telephone, email or via our website. CLS will use Copyprint to send correspondence on behalf of CLS. For this purpose CLS will send names and addresses to Copyprint.
• Withdrawal from the current survey: CLS will flag this on its computer system to indicate that the participant will not be taking part in the current survey and the reason for not wanting to take part is also recorded. For example, they may just not have the time to take part. Therefore there will be no further contact with the participant for the duration of the current survey but they will be invited to take part in the next survey.
If cohort members confirm their address this will be recorded on our database as a confirmed address. If the letter is ‘returned to sender’ this will be also be recorded our database. There will also be cases where no confirmation is received and our letter is not returned to sender.
• Withdrawal from the study: CLS will flag this on its computer system as a permanent refusal to indicate that the participant will not be taking any further part in the study itself and the reason for this type of withdrawal is also recorded for analysis purposes. Therefore there will be no further contact with the participant for the remainder of the longitudinal study. If this request is received in writing then CLS will acknowledge the request and notify the participant that they have been flagged and will no longer be contacted or receive any further communications. This request may sometimes be accompanied by a request for the destruction of their data.
CLS have not yet found a Data Processor who will assist with pilot study tasks during late-2019 to 2020 prior to the Age 50 Survey. An amendment will be submitted once an organisation has been selected to introduce the new Data Processor into the agreement.
All those accessing the data supplied by NHS Digital are substantive employees of University College London or employees of subcontractor organisation carrying work on behalf of UCL. CLS have identified the scenarios where NHS Digital data will be processed by CLS and its Data Processor.
CLS will write to all newly traced cohort members at the addresses that are supplied by NHS Digital – and will ask them to confirm their address by return of a reply slip, telephone, email or via our website. CLS will use Copyprint to send correspondence on behalf of CLS. For this purpose CLS will send names and addresses to Copyprint. If cohort members confirm their address this will be recorded on our database as a confirmed address. If the letter is ‘returned to sender’ this will be also be recorded our database. There will also be cases where no confirmation is received and our letter is not returned to sender.
The addresses previously obtained from NHS Digital were used to invite study members (whom CLS have lost contact with are classed as ‘UNTRACED’) to take part in the BCS70 Age 46 survey. However, this data is never sent or published to the UK Data Service.
CLS has submitted an amendment to the CAG approval for Section 251 coverage to include two new processors to conduct study tasks assisting with carrying out interviews with study participants. Once this amendment has been approved, CLS will submit an amendment to this agreement to add these additional processors to the agreement and describe the relevant flows of data.
[1 paragraph unchanged]
Expected output
The data file supplied from NHS Digital, as part of this list clean application, will be processed within CLS and entered into CLS’s secure confidential address database i.e. CLS will load more recent addresses into the database. All BCS70 study members contact information is held in this secure confidential address database at CLS.
The main outcome from the BCS70 Age 50 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
Any study members choosing not to take part in the study are flagged on this database with a code denoting whether their refusal is temporary (i.e. for a particular wave/survey) or permanent (i.e. they wish to have no further involvement in the study). Any previously deposited anonymised survey data for a study member and confidential data from the address database are retained unless the study member specifically asks us not to, in which case this data is securely deleted.
CLS has previously made outputs from the study available for researchers via the UK Data Service. This data is presented as aggregated with small numbers suppressed and consists of data collated during Age Surveys by interviewers. Outputs will not include data provided by NHS Digital.
The addresses previously obtained from NHS Digital were used to invite study members (whom we have lost contact with are classed as ‘UNTRACED’) to take part in the BCS70 Age 46 survey. However, this data received via this application is never sent or published to the UK Data Service.
The Age 46 Sweep involved many data collection elements which contribute to outputs, a full list of which is provided below:
With regard to a request for 'withdrawal' from a participant CLS classifies them as a 'withdrawal from the current survey' or a 'withdrawal from the study' and these are handled slightly differently:
• 45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
• Withdrawal from the current survey: CLS will flag this on its computer system to indicate that the participant will not be taking part in the current survey and the reason for not wanting to take part is also recorded. For example, they may just not have the time to take part. Therefore there will be no further contact with the participant for the duration of the current survey but they will be invited to take part in the next survey.
• Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
• Withdrawal from the study: CLS will flag this on its computer system as a permanent refusal to indicate that the participant will not be taking any further part in the study itself and the reason for this type of withdrawal is also recorded for analysis purposes. Therefore there will be no further contact with the participant for the remainder of the longitudinal study. If this request is received in writing then CLS will acknowledge the request and notify the participant that they have been flagged and will no longer be contacted or receive any further communications. This request may sometimes be accompanied by a request for the destruction of their data.
• Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
Outputs for the List Clean:
• Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
The main outcome from the BCS70 Age 46 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2019 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
• Blood pressure measurement
The addresses previously obtained from NHS Digital were used to invite study members to take part in the BCS70 Age 46 survey and they will be used to invite study members to take part in the future sweep age 50 taking place in 2020. Therefore, this application is to request an extension to the current agreement to keep the data we currently hold and to carry out another 2 list cleans in preparation for age 50, and to receive notifications of deaths and embarkations biannually.
• Grip strength assessment
• Balance assessment
• Blood sample collection
• Activity monitor
• Online dietary diary
Data from the Age 46 Sweep will be made available for researchers to access via the UK Data Service from October 2019, providing an important resource for UK Social Science, including researchers in health and social care.
• The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will collect data on different factors of participant functioning and socio-economic factors:
• Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking,
• diet, exercise), cognitive function.
• Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
• Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
• Social capital, social and political participation, attitudes and values, and religion.
The data will be used to produce outputs at the same level as produced from the Age 46 Sweep and will be available for researchers to access via the UK Data Service from early 2023.
The BCS70 study has seen interest from a large number of research groups, where CLS outputs have been referenced in research publications addressing a large scope of areas within health and social care. A list of the publications referencing the study can be found at the link below:
https://www.bibliography.cls.ucl.ac.uk/Bibliography.aspx?sitesectionid=647&sitesectiontitle=Bibliography
Outputs for the use of NHS Digital data:
The addresses previously obtained from NHS Digital were used to invite study members to take part in the BCS70 Age 46 survey and they will be used to invite study members to take part in the future sweep age 50 taking place in 2020. The previous application requested an extension to the current agreement to keep the data we currently hold and to carry out another 2 list cleans in preparation for age 50, and to receive notifications of deaths and embarkations biannually.
The expected outcome of processing this data is a more accurate database of participant demographics information, available to CLS and the appointed Data Processors in identifiable form in order to effectively contact participants and maximise the participant rate in regular surveys.
Unchanged: Expected measurable benefits, Benefits reported.
Objective for processing
Background
The British Cohort Study 1970 (BCS) is one of Britain’s world renowned national longitudinal birth cohort studies. It follows a large sample of individuals born over a limited period of time (all those born in one week in 1970) through the course of their lives, charting the effects of events and circumstances in early life on outcomes and achievements later on. They show how histories of health, wealth, education, family and employment are interwoven for individuals and vary between them.
The study is run by the Centre for Longitudinal Studies (CLS) at the University of London, and funded by the Economic and Social Research Council.
Since 1970 there have been nine attempts to gather information from the whole cohort. Over time, the scope of enquiry has broadened from a medical focus at birth, to encompass physical and educational development at the age of five, physical, educational and social development at the ages of ten and sixteen, and then to include economic development and other wider factors at ages 26, 30, 34, 38 and 42. The most recent survey was Age 46 and future sweeps surveys will take place roughly every 5 years. The ongoing success of the study depends on maintaining contact with as many study members as possible especially during interim periods between surveys.
The study has its origins in the British Births Survey in which information was gathered about almost 17,500 babies. The original study focused on the circumstances and outcomes of birth but since then the study has broadened in scope to map all aspects of health, education, social and economic development. The current survey will provide an updated picture of the circumstances and experiences of those born in the early seventies in England, Scotland and Wales and will help develop an understanding of their progress into the latter period of their lives.
The most recent Age 46 survey began in July 2016 and was scheduled to run until July 2018. As of the beginning of February 2018, data had been collected from just over 6,000 participants and by completion it was projected that approximately 8,500 will have taken part. The Age 46 Survey had a particular focus on health and was conducted by interviewers and registered nurses. The survey involved an interview, anthropometric measurements, blood pressure assessment, measures of physical functioning (grip strength and balance assessments) and the collection of blood samples (for immediate analysis of cholesterol and glycated haemoglobin, storage for future analysis and future DNA extraction). In addition, participants were asked to wear a device which measured physical activity levels for 7 days and to complete an online questionnaire about their diet. The objective measures of health had been funded by the Medical Research Council and the British Heart Foundation.
The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will cover the following topics:
Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.
Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood, Social capital, social and political participation, attitudes and values, and religion.
In addition, participants will be asked to download and play a smart-phone based game, which will measure navigational skills, one of the first skills to decline with the onset of dementia and Alzheimer’s disease. The game has been developed in association with Alzheimer’s UK. The data collected will be analysed in combination with the life history information collected over the course of the study’s history to allow for novel investigation of the factors associated with navigational skills in mid-life.
Aim
The ongoing success of the study depends on maintaining contact with as many study participants as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for the study members whose whereabouts are currently unknown. CLS believe that a substantial number of these individuals would be willing to participate in the Age 50 survey if they could be contacted. Previous efforts to re-establish contact for the BCS70 cohort study have been very successful using this route.
CLS wish to access NHS Digital data for the purpose of updating participant demographic data held on CLS systems for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study. CLS also requests access to mortality data included within the reports outlined below to be used in the process of contacting participants involved in previous sweeps.
Data Summary
CLS are requesting access to record level, identifiable data linked to the cohort from the following Medical Research reports:
MRIS – Cause of Death Report
MRIS - List Cleaning Report
MRIS Members and Postings Report
MRIS – Cohort Event Notification Report
MRIS – Flagging Current Status Report
Under previous versions of this agreement, CLS has benefited from the use of NHS Digital data to assist with maximising participation in Age Surveys. Therefore, a further wave of list cleaning exercises was requested, i.e. this agreement, to try and find updated addresses for those who are found during fieldwork to have moved from the address held. This will further boost the number who can be contacted and invited to participate. Multiple list cleans have been requested for the purpose of tracing address details of participants over the period leading up to the Age 50 survey. Distribution of study materials, annual courtesy letters and pilot studies planned for the 2019-2020 period would benefit from the most up to date contact information for participants, thus an additional list clean is required.
UCL’s legal bases for processing the data under General Data Protection Regulation is bases under Article 6(1)(e) ‘processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller’ & Article 9(2)(j) ‘processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject’.
Aggregated data with small numbers suppressed will be made available to the research community in late 2019, forming an invaluable resource for health research. Researchers will be able to use the rich life-history data collected over the duration of the study’s life in conjunction with the data collected in the BCS70 Age 46 survey to examine the longitudinal predictors of health in mid-life. It is then planned that the measures conducted will be repeated in future sweeps of the study, which will allow for research which deepens the understanding of changes in health which occur with ageing. No patient identifiable data is made available for research.
The cohort currently held by NHS Digital, totalling roughly 15,976, was calculated as an adaptation of the original participant population, excluding study members in Scotland. Of the roughly 15,976 individuals invited to participate in the BCS70 Age 50 Survey, CLS predict that researchers will have difficulty contacting a small proportion of this population for the purposes of distributing study material and invitations for participating in Age Surveys. Preparations for the previous Age Survey (46) highlighted a group of study members where contact has been lost between researchers and the study member due to out-of-date address information. These are not individuals which have informed CLS that they wish to withdraw from the study, the researchers have simply lost touch with them as they have moved home and not informed CLS. This application for the MRIS list cleaning report is for the members of the cohort lost to follow up only.
CLS have commissioned Copyprint UK Limited to distribute mailings to all participants including regular messages regarding Age Surveys and to maintain contact with the study. These tasks serve the purpose of ensuring maximum participation in each of the Age Surveys planned throughout the study. Copyprint will have access to participant demographic information and contact details in order to fulfil their obligation. This includes data which has been supplied to Copyprint directly from NHS Digital's dissemination and data which has been 'washed' through being updated by the data subject directly. Copyprint are not permitted to use the data for any other purpose.
University College London (UCL) are the sole Data Controller for this agreement. All Data Processors party to this agreement are acting upon the instruction of the controller.
Expected output
The main outcome from the BCS70 Age 50 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
CLS has previously made outputs from the study available for researchers via the UK Data Service. This data is presented as aggregated with small numbers suppressed and consists of data collated during Age Surveys by interviewers. Outputs will not include data provided by NHS Digital.
The Age 46 Sweep involved many data collection elements which contribute to outputs, a full list of which is provided below:
• 45-minute core interview – topics covered include: relationships, children, parents, place of residence, economic activity, income, qualifications and training, physical and mental health, smoking, drinking, exercise
• Cognitive assessments – immediate and delayed word recall, letter cancellation and animal-naming tasks
• Paper self-completion questionnaire – topics covered include physical health, mental health and well-being, physical activity, and leisure activities
• Anthropometric measurements (height, weight, body-fat, waist/hip circumference)
• Blood pressure measurement
• Grip strength assessment
• Balance assessment
• Blood sample collection
• Activity monitor
• Online dietary diary
Data from the Age 46 Sweep will be made available for researchers to access via the UK Data Service from October 2019, providing an important resource for UK Social Science, including researchers in health and social care.
• The upcoming Age 50 Survey will involve a core interview and a paper self-completion questionnaire which will collect data on different factors of participant functioning and socio-economic factors:
• Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking,
• diet, exercise), cognitive function.
• Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.
• Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood,
• Social capital, social and political participation, attitudes and values, and religion.
The data will be used to produce outputs at the same level as produced from the Age 46 Sweep and will be available for researchers to access via the UK Data Service from early 2023.
The BCS70 study has seen interest from a large number of research groups, where CLS outputs have been referenced in research publications addressing a large scope of areas within health and social care. A list of the publications referencing the study can be found at the link below:
https://www.bibliography.cls.ucl.ac.uk/Bibliography.aspx?sitesectionid=647&sitesectiontitle=Bibliography
Outputs for the use of NHS Digital data:
The addresses previously obtained from NHS Digital were used to invite study members to take part in the BCS70 Age 46 survey and they will be used to invite study members to take part in the future sweep age 50 taking place in 2020. The previous application requested an extension to the current agreement to keep the data we currently hold and to carry out another 2 list cleans in preparation for age 50, and to receive notifications of deaths and embarkations biannually.
The expected outcome of processing this data is a more accurate database of participant demographics information, available to CLS and the appointed Data Processors in identifiable form in order to effectively contact participants and maximise the participant rate in regular surveys.
Benefits reported
There have been hundreds of published journal articles, books, chapters, reports or conference presentations based on data from the 1970 British Cohort Study.
Below are some examples of existing publications using BCS70 data benefiting public health:
• TAYLOR, B and WADSWORTH, J. (1987) Maternal smoking during pregnancy and lower respiratory tract illness in early life. Archives of Disease in Childhood, 62(8), 786-791.
IMPACT: Research from BCS70 has contributed to the understanding of the effects of maternal smoking on child health.
SUMMARY: In a national study of 12,743 children maternal, but not paternal, smoking was confirmed as having a significant influence on the reported incidence of bronchitis and admission to hospital for lower respiratory tract illness during the first five years of life. Reported rates of admissions to hospital for lower respiratory tract diseases were found to be as high in children born to mothers who stopped smoking during pregnancy as in those whose mothers smoked continuously both during and after pregnancy. Rates of admissions to hospital for lower respiratory tract diseases in children whose mothers started smoking only postnatally were no higher than in those whose mothers remained non-smokers. Postnatal smoking seemed to exert a significant influence on the reported incidence of bronchitis, but less than smoking during pregnancy. These findings suggest that maternal smoking influences the incidence of respiratory illnesses in children mainly through a congenital effect, and only to a lesser extent through passive exposure after birth.
• MARMOT, M and BELL, R. (2016) Social inequalities in health: a proper concern of epidemiology. Annals of Epidemiology, 26(4), 238-240.
IMPACT: Research using BCS70 has highlighted an interrogated socio-economic inequalities in health.
Abstract: Social inequalities are a proper concern of epidemiology. Epidemiological thinking and modes of analysis are central, but epidemiological research is one among many areas of study that provide the evidence for understanding the causes of social inequalities in health and what can be done to reduce them. Understanding the causes of health inequalities requires insights from social, behavioural and biological sciences, and a chain of reasoning that examines how the accumulation of positive and negative influences over the life course leads to health inequalities in adult life. Evidence that the social gradient in health can be reduced should make us optimistic that reducing health inequalities is a realistic goal for all societies.
• PLOUBIDIS, G.B, SULLIVAN, A, BROWN, M and GOODMAN, A. (2017) Psychological Distress in Mid-Life: Evidence from the 1958 and 1970 British Birth Cohorts. Psychological Medicine, 47(2), 291-303.
IMPACT: Research using BCS70 has highlighted the growing problem of depression in the UK.
Abstract: This paper addresses the levels of psychological distress experienced at age 42 years by men and women born in 1958 and 1970. Comparing these cohorts born 12 years apart, we ask whether psychological distress has increased, and, if so, whether this increase can be explained by differences in their childhood conditions. Data were utilized from two well-known population-based birth cohorts, the National Child Development Study and the 1970 British Cohort Study. Latent variable models and causal mediation methods were employed. After establishing the measurement equivalence of psychological distress in the two cohorts we found that men and women born in 1970 reported higher levels of psychological distress compared with those born in 1958. These differences were more pronounced in men (b = 0.314, 95% confidence interval 0.252–0.375), with the magnitude of the effect being twice as strong compared with women (b = 0.147, 95% confidence interval 0.076–0.218). The effect of all hypothesized early-life mediators in explaining these differences was modest. Our findings have implications for public health policy, indicating a higher average level of psychological distress among a cohort born in 1970 compared with a generation born 12 years earlier. Due to increases in life expectancy, more recently born cohorts are expected to live longer, which implies – if such differences persist – that they are likely to spend more years with mental health-related morbidity compared with earlier-born cohorts.
• V.P. Mateia, A.I. Mihăilescub, L.V. Diaconescuc, T. Purnichid, R. Grigorașe, O. Popa-Veleac (2018) Depression in young adults diagnosed with cancer – an analysis of the outcomes of 1970 British Cohort Study.
IMPACT: Research using BCS70 Cohort Study data has contributed to the understanding of the risk of depression in young patients diagnosed with cancer.
Summary
The study found that the risk of depression is higher at people with onset of cancer before 30. The study did not identify an increased risk for depression by socioeconomic status. Instead, they suggest the importance of active screening and treatment of depression at young patients with cancer.
Detailed information about the study can be found here https://www.sciencedirect.com/science/article/pii/S0022399918303088?via%3Dihub
BANN, D, JOHNSON, W, LI, L, KUH, D and HARDY, R. (2018) Socioeconomic inequalities in childhood and adolescent body-mass index, weight, and height from 1953 to 2015: an analysis of four longitudinal, observational, British birth cohort studies. Lancet Public Health, 3(4), e194-e203.
IMPACT: Research using BCS70 Cohort Study data has contributed to the understanding of how socioeconomic inequalities in childhood body-mass index (BMI) have been documented in high-income countries, how they have changed over time, how inequalities in the composite parts (ie, weight and height) of BMI have changed, and whether inequalities differ in magnitude across the outcome distribution. The study investigated how socioeconomic inequalities in childhood and adolescent weight, height, and BMI have changed over time in Britain.
Detailed information about the study can be found here https://www.sciencedirect.com/science/article/pii/S2468266718300458?via%3Dihub
CHENG, H and FURNHAM, A. (2018) Teenage locus of control, psychological distress, educational qualifications and occupational prestige as well as sex are independent predictors of adult binge drinking. Alcohol, advance online access, 1 Sept 2018.
IMPACT : Research using BCS70 Cohort Study data has contributed to the understanding of how various psychological and socio-demographic factors in childhood and adulthood that relate to alcohol intake and binge drinking at age 42 years.
abstract:
Data were drawn from the 1970 British Cohort Study (BCS70), The analytic sample comprised 5267 cohort members with data on parental social class at birth, cognitive ability at age 10, locus of control at age 16, psychological distress at age 30, educational qualifications at age 34, and current occupation and alcohol consumption at age 42 years. Results showed that sex (male), lower parental social class, adolescent external locus of control, psychological distress, lower scores on childhood intelligence, lower educational qualifications and less professional occupations were all significantly and positively associated with binge drinking in adulthood. Both psychological and social factors influence adult excessive alcohol consumption. Adolescent locus of control beliefs had a modest but significant effect on adult binge drinking 26 years later.
detailed information can be found here:
https://www.sciencedirect.com/science/article/pii/S0741832916301677?via%3Dihub
For more information about published work using this study access cls.ucl.ac.uk
DARS-NIC-17218-B0W9X-v2.9 1 June 2018 to 31 May 2021
- Title
- 1970 British Cohort Study - MR21
- Commercial
- No
- Sublicensing
- No
- Datasets
- 5
- Files released
- 5
Datasets: MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - List Cleaning Report; MRIS - Members and Postings Report
Objective for processing
The British Cohort Study 1970 (BCS) is one of Britain’s world renowned national longitudinal birth cohort studies. It follows a large sample of individuals born over a limited period of time (all those born in one week in 1970) through the course of their lives, charting the effects of events and circumstances in early life on outcomes and achievements later on. They show how histories of health, wealth, education, family and employment are interwoven for individuals and vary between them.
The study is run by the Centre for Longitudinal Studies (CLS) at the University of London, and funded by the Economic and Social Research Council.
Since 1970 there have been nine attempts to gather information from the whole cohort. Over time, the scope of enquiry has broadened from a medical focus at birth, to encompass physical and educational development at the age of five, physical, educational and social development at the ages of ten and sixteen, and then to include economic development and other wider factors at ages 26, 30, 34, 38 and 42. The most recent survey was Age 46 and future sweeps surveys will take place roughly every 5 years. The ongoing success of the study depends on maintaining contact with as many study members as possible especially during interim periods between surveys.
The study has its origins in the British Births Survey in which information was gathered about almost 17,500 babies. The original study focused on the circumstances and outcomes of birth but since then the study has broadened in scope to map all aspects of health, education, social and economic development. The current survey will provide an updated picture of the circumstances and experiences of those born in the early seventies in England, Scotland and Wales and will help develop an understanding of their progress into the latter period of their lives.
The most recent Age 46 survey began in July 2016 and was scheduled to run until July 2018. As of the beginning of February 2018, data had been collected from just over 6,000 participants and by completion it was projected that approximately 8,500 will have taken part. The Age 46 Survey has a particular focus on health and was conducted by interviewers and registered nurses. The survey involved an interview, anthropometric measurements, blood pressure assessment, measures of physical functioning (grip strength and balance assessments) and the collection of blood samples (for immediate analysis of cholesterol and glycated haemoglobin, storage for future analysis and future DNA extraction). In addition, participants are asked to wear a device which measures physical activity levels for 7 days and to complete an online questionnaire about their diet. The objective measures of health had been funded by the Medical Research Council and the British Heart Foundation.
For the BCS70 Age 46 survey, CLS contracted an external supplier NatCen Social Research (the trading name of the National Centre for Social Research) to carry out the individual study members’ interviews. For the Age 50 Survey, CLS will be appointing a new contractor to assist with the pilot studies planned for the 2019-2020 period prior to the Age 50 Survey.
The record-level pseudonymised research data will be deposited at the UK Data Service. Aggregated data with small numbers suppressed will be made available to the research community in late 2019, forming an invaluable resource for health research. Researchers will be able to use the rich life-history data collected over the duration of the study’s life in conjunction with the data collected in the BCS70 Age 46 survey to examine the longitudinal predictors of health in mid-life. It is then planned that the measures conducted will be repeated in future sweeps of the study, which will allow for research which deepens the understanding of changes in health which occur with ageing. No patient identifiable data is made available for research.
The cohort currently held by NHS Digital, totalling roughly 15,976, was calculated as an adaptation of the original participant population, excluding study members in Scotland. Of the roughly 15,976 individuals invited to participate in the BCS70 Age 50 Survey, CLS predict that researchers will have difficulty contacting a small proportion of this population for the purposes of distributing study material and invitations for participating in Age Surveys. Preparations for the previous Age Survey (46) highlighted a group of study members where contact has been lost between researchers and the study member due to out-of-date address information. These are not individuals which have informed CLS that they wish to withdraw from the study, the researchers have simply lost touch with them as they have moved home and not informed CLS. This application for the MRIS list cleaning report is for the members of the cohort lost to follow up only.
The ongoing success of the study depends on maintaining contact with as large a number of study members as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for the study members whose whereabouts are currently unknown. CLS feel that a substantial number of these individuals would be willing to participate in the Age 50 survey if they could be contacted. Previous efforts to re-establish contact for our BCS70 cohort study have been very successful using this route.
CLS have commissioned Copyprint UK Limited to distribute mailings to all participants including regular messages regarding Age Surveys and to maintain contact with the study. These tasks serve the purpose of ensuring maximum participation in each of the Age Surveys planned throughout the study. Copyprint will have access to participant demographic information and contact details in order to fulfil their obligation. This includes data which has been supplied to Copyprint directly from NHS Digital's dissemination and data which has been 'washed' through being updated by the data subject directly. Copyprint are not permitted to use the data for any other purpose.
The on-going success of the study depends on maximising participation. The successful list clean exercise which took place during the previous iteration of this agreement, prior to the launch of fieldwork, allowed CLS to invite around 318 previously untraced study members to take part. Of the 1370 untraced cohort members, 1164 cases were returned by NHS Digital where 537 of these records provided CLS with updated address details. In summary, CLS were able to invite 318 participants to take part in the study where they would otherwise be unable to do so.
Therefore, a 2nd wave of list cleaning exercises was planned i.e. this agreement, to try and find updated addresses for those who are found during fieldwork to have moved from the address held. This will further boost the number who can be contacted and invited to participate. Multiple list cleans have been requested for the purpose of tracing address details of participants over the period leading up to the Age 50 survey. Distribution of study materials, annual courtesy letters and pilot studies planned for the 2019-2020 period would benefit from the most up to date contact information for participants, thus an additional list clean is required.
Expected output
The data file supplied from NHS Digital, as part of this list clean application, will be processed within CLS and entered into CLS’s secure confidential address database i.e. CLS will load more recent addresses into the database. All BCS70 study members contact information is held in this secure confidential address database at CLS.
Any study members choosing not to take part in the study are flagged on this database with a code denoting whether their refusal is temporary (i.e. for a particular wave/survey) or permanent (i.e. they wish to have no further involvement in the study). Any previously deposited anonymised survey data for a study member and confidential data from the address database are retained unless the study member specifically asks us not to, in which case this data is securely deleted.
The addresses previously obtained from NHS Digital were used to invite study members (whom we have lost contact with are classed as ‘UNTRACED’) to take part in the BCS70 Age 46 survey. However, this data received via this application is never sent or published to the UK Data Service.
With regard to a request for 'withdrawal' from a participant CLS classifies them as a 'withdrawal from the current survey' or a 'withdrawal from the study' and these are handled slightly differently:
• Withdrawal from the current survey: CLS will flag this on its computer system to indicate that the participant will not be taking part in the current survey and the reason for not wanting to take part is also recorded. For example, they may just not have the time to take part. Therefore there will be no further contact with the participant for the duration of the current survey but they will be invited to take part in the next survey.
• Withdrawal from the study: CLS will flag this on its computer system as a permanent refusal to indicate that the participant will not be taking any further part in the study itself and the reason for this type of withdrawal is also recorded for analysis purposes. Therefore there will be no further contact with the participant for the remainder of the longitudinal study. If this request is received in writing then CLS will acknowledge the request and notify the participant that they have been flagged and will no longer be contacted or receive any further communications. This request may sometimes be accompanied by a request for the destruction of their data.
Outputs for the List Clean:
The main outcome from the BCS70 Age 46 survey will be a fully documented, anonymised research dataset and this will be archived with the UK Data Service in late 2019 to provide a strategically important resource for UK Social Science, including researchers in health and social care. Researchers will only have access to aggregated data with small numbers suppressed, in accordance with the HES Analysis Guide.
The addresses previously obtained from NHS Digital were used to invite study members to take part in the BCS70 Age 46 survey and they will be used to invite study members to take part in the future sweep age 50 taking place in 2020. Therefore, this application is to request an extension to the current agreement to keep the data we currently hold and to carry out another 2 list cleans in preparation for age 50, and to receive notifications of deaths and embarkations biannually.
Benefits reported
There have been hundreds of published journal articles, books, chapters, reports or conference presentations based on data from the 1970 British Cohort Study.
Below are some examples of existing publications using BCS70 data benefiting public health:
• TAYLOR, B and WADSWORTH, J. (1987) Maternal smoking during pregnancy and lower respiratory tract illness in early life. Archives of Disease in Childhood, 62(8), 786-791.
IMPACT: Research from BCS70 has contributed to the understanding of the effects of maternal smoking on child health.
SUMMARY: In a national study of 12,743 children maternal, but not paternal, smoking was confirmed as having a significant influence on the reported incidence of bronchitis and admission to hospital for lower respiratory tract illness during the first five years of life. Reported rates of admissions to hospital for lower respiratory tract diseases were found to be as high in children born to mothers who stopped smoking during pregnancy as in those whose mothers smoked continuously both during and after pregnancy. Rates of admissions to hospital for lower respiratory tract diseases in children whose mothers started smoking only postnatally were no higher than in those whose mothers remained non-smokers. Postnatal smoking seemed to exert a significant influence on the reported incidence of bronchitis, but less than smoking during pregnancy. These findings suggest that maternal smoking influences the incidence of respiratory illnesses in children mainly through a congenital effect, and only to a lesser extent through passive exposure after birth.
• MARMOT, M and BELL, R. (2016) Social inequalities in health: a proper concern of epidemiology. Annals of Epidemiology, 26(4), 238-240.
IMPACT: Research using BCS70 has highlighted an interrogated socio-economic inequalities in health.
Abstract: Social inequalities are a proper concern of epidemiology. Epidemiological thinking and modes of analysis are central, but epidemiological research is one among many areas of study that provide the evidence for understanding the causes of social inequalities in health and what can be done to reduce them. Understanding the causes of health inequalities requires insights from social, behavioural and biological sciences, and a chain of reasoning that examines how the accumulation of positive and negative influences over the life course leads to health inequalities in adult life. Evidence that the social gradient in health can be reduced should make us optimistic that reducing health inequalities is a realistic goal for all societies.
• PLOUBIDIS, G.B, SULLIVAN, A, BROWN, M and GOODMAN, A. (2017) Psychological Distress in Mid-Life: Evidence from the 1958 and 1970 British Birth Cohorts. Psychological Medicine, 47(2), 291-303.
IMPACT: Research using BCS70 has highlighted the growing problem of depression in the UK.
Abstract: This paper addresses the levels of psychological distress experienced at age 42 years by men and women born in 1958 and 1970. Comparing these cohorts born 12 years apart, we ask whether psychological distress has increased, and, if so, whether this increase can be explained by differences in their childhood conditions. Data were utilized from two well-known population-based birth cohorts, the National Child Development Study and the 1970 British Cohort Study. Latent variable models and causal mediation methods were employed. After establishing the measurement equivalence of psychological distress in the two cohorts we found that men and women born in 1970 reported higher levels of psychological distress compared with those born in 1958. These differences were more pronounced in men (b = 0.314, 95% confidence interval 0.252–0.375), with the magnitude of the effect being twice as strong compared with women (b = 0.147, 95% confidence interval 0.076–0.218). The effect of all hypothesized early-life mediators in explaining these differences was modest. Our findings have implications for public health policy, indicating a higher average level of psychological distress among a cohort born in 1970 compared with a generation born 12 years earlier. Due to increases in life expectancy, more recently born cohorts are expected to live longer, which implies – if such differences persist – that they are likely to spend more years with mental health-related morbidity compared with earlier-born cohorts.
• V.P. Mateia, A.I. Mihăilescub, L.V. Diaconescuc, T. Purnichid, R. Grigorașe, O. Popa-Veleac (2018) Depression in young adults diagnosed with cancer – an analysis of the outcomes of 1970 British Cohort Study.
IMPACT: Research using BCS70 Cohort Study data has contributed to the understanding of the risk of depression in young patients diagnosed with cancer.
Summary
The study found that the risk of depression is higher at people with onset of cancer before 30. The study did not identify an increased risk for depression by socioeconomic status. Instead, they suggest the importance of active screening and treatment of depression at young patients with cancer.
Detailed information about the study can be found here https://www.sciencedirect.com/science/article/pii/S0022399918303088?via%3Dihub
BANN, D, JOHNSON, W, LI, L, KUH, D and HARDY, R. (2018) Socioeconomic inequalities in childhood and adolescent body-mass index, weight, and height from 1953 to 2015: an analysis of four longitudinal, observational, British birth cohort studies. Lancet Public Health, 3(4), e194-e203.
IMPACT: Research using BCS70 Cohort Study data has contributed to the understanding of how socioeconomic inequalities in childhood body-mass index (BMI) have been documented in high-income countries, how they have changed over time, how inequalities in the composite parts (ie, weight and height) of BMI have changed, and whether inequalities differ in magnitude across the outcome distribution. The study investigated how socioeconomic inequalities in childhood and adolescent weight, height, and BMI have changed over time in Britain.
Detailed information about the study can be found here https://www.sciencedirect.com/science/article/pii/S2468266718300458?via%3Dihub
CHENG, H and FURNHAM, A. (2018) Teenage locus of control, psychological distress, educational qualifications and occupational prestige as well as sex are independent predictors of adult binge drinking. Alcohol, advance online access, 1 Sept 2018.
IMPACT : Research using BCS70 Cohort Study data has contributed to the understanding of how various psychological and socio-demographic factors in childhood and adulthood that relate to alcohol intake and binge drinking at age 42 years.
abstract:
Data were drawn from the 1970 British Cohort Study (BCS70), The analytic sample comprised 5267 cohort members with data on parental social class at birth, cognitive ability at age 10, locus of control at age 16, psychological distress at age 30, educational qualifications at age 34, and current occupation and alcohol consumption at age 42 years. Results showed that sex (male), lower parental social class, adolescent external locus of control, psychological distress, lower scores on childhood intelligence, lower educational qualifications and less professional occupations were all significantly and positively associated with binge drinking in adulthood. Both psychological and social factors influence adult excessive alcohol consumption. Adolescent locus of control beliefs had a modest but significant effect on adult binge drinking 26 years later.
detailed information can be found here:
https://www.sciencedirect.com/science/article/pii/S0741832916301677?via%3Dihub
For more information about published work using this study access cls.ucl.ac.uk
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds, the earliest of which is July 2021.
-
July 2021 —
already listed in the earliest edition this site holds, so it may be older. 4 versions: DARS-NIC-17218-B0W9X-v2.9, DARS-NIC-17218-B0W9X-v3.6, DARS-NIC-17218-B0W9X-v4.2, DARS-NIC-17218-B0W9X-v5.4
-
February 2022
1 version added: DARS-NIC-17218-B0W9X-v6.3
-
August 2023
Amended DARS-NIC-17218-B0W9X-v6.3
- Objective for processing:
reworded
Show the change
This Data Sharing Agreement permits the retention and no further processing of the data provided under previous iterations of this Agreement. No new data flows between NHS Digital and University College London (UCL) will take place under this Agreement. . The following describes the purposes for which data was supplied under previous versions of this Agreement. [26 paragraphs unchanged]
- Objective for processing:
reworded
-
October 2023
1 version added: DARS-NIC-17218-B0W9X-v7.3
-
October 2024
1 version added: DARS-NIC-17218-B0W9X-v8.3
-
May 2025
1 version added: DARS-NIC-17218-B0W9X-v9.2
-
June 2026
1 version added: DARS-NIC-17218-B0W9X-v10.2
"Amended in place" means NHS England changed the record without issuing a new version number. The register publishes no changelog for those edits; this site infers them by comparing editions. An edit is attributed to the edition it first appears in, not to the date it was made.
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-17218-B0W9X, “Centre for Longitudinal Studies -1970 British Cohort Study-Mortality”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-17218-b0w9x/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-17218-B0W9X to see the original rows.