1970 British Cohort Study - Tracing

The Centre for Longitudinal Studies (CLS) at University College London (UCL) is an academic resource centre responsible for producing and disseminating data resources for the scientific community. It is responsible for four of Britain's internationally renowned longitudinal cohort studies, the 1958 National Child Development Study, the 1970 British Cohort Study (BCS70), the Next Steps, and the Millennium Cohort Study (MCS). All these studies are following the groups of participants from cradle to grave. As such, this group of studies is unique and has, and still is, providing a wealth of information used in the policy decisions affecting society's health and well-being.

This Data Sharing Agreement is specific to the 1970 British Cohort Study (BCS70).

The purpose of this Agreement is to update CLS' database with new addresses . CLS is requesting to receive updated addresses for the BCS70 cohort members on an annual basis. The new addresses will be used to invite participants to take part in the upcoming survey it will also be used to communicate with participants in between sweeps for various other activities related to their participation in survey, for example, pilot surveys, participant engagement, birthday communications etc.

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. 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 Study is funded by the Economic and Social Research Council (ESRC).

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, 42 and 46. The latest sweep age 51 was scheduled to begin in 2020. Due to the pandemic, it had to be postponed and ended in January 2024.

The Sweep age 51 will provide the opportunity to collect a range of information from cohort members to aid the understanding of midlife outcomes across multiple life domains and their lifetime determinants. This data collection will build on the extensive data collected from birth and across the lifetime of cohort members and will facilitate comparisons with other generations, particularly the 1958 cohort at 50, and the 1946 cohort at 53, allowing for the study of social change. The data will be of interest to researchers working in a wide range of disciplines, including population health and epidemiology, economics, sociology, demography, psychology and others. It has the potential to inform a wide range of policies, including relating to work, health, relationships, and civic participation. It will include face-to-face interview with cognitive assessments (some interviews may be carried out via video link rather than in person), paper self-completion questionnaire and online diet questionnaire. The interview and paper self-completion questionnaire covered the following three broad themes:

- Family, relationships and identity: including topics such as social networks, relationships with partners, parents, children, friends, neighbourhood, social and cultural capital, social and political participation, attitudes and values, religion, and expectations.

- Finances and employment: including topics such as work, income, wealth (savings and debts, pensions, and housing), inheritance (receiving and giving) and other transfers, and education.

- Health, wellbeing and cognition: including topics such as physical health, mental health, medical care, medication, smoking, drinking, diet, exercise, and cognitive function.

Data Summary

CLS are requesting access to record level, identifiable data linked to the cohort from the following datasets:

- Demographics dataset

Aim

Of the approximately 17,500 individuals that have ever participated in the study there will always be a number of individuals for whom the Centre for Longitudinal Studies (CLS) at University College London will not have confirmed addresses at the time of carrying out the next survey.

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 BCS70 cohort members. CLS believe that a substantial number of these individuals would be willing to participate in the Age 51 survey if they could be contacted. Previous efforts to re-establish contact for earlier surveys for the BCS70 cohort study have been very successful, using NHS England data to assist with maximising participation in the Surveys.

All of these individuals have made an informed decision to participate in the study over the years and have been made aware that the study is seeking to follow them throughout their lives. This information is provided to participants on the study website under ‘How we find you’ https://bcs70.info/faqs/#keeping-in-touch# ‘Do you use information held by Government to find us?'. CLS provide a link to the information on the study website in all materials provided to cohort members. Cohort members receive an advance booklet with complete information about each upcoming survey.

Each year CLS sends an annual postal mailing to all BCS70 participants. CLS asks that participants complete a reply slip which is returned to CLS which allows participants to provide CLS with any change in their details e.g., a new email address, phone number, etc. CLS also ask them to return the reply slip even if none of their details have changed i.e., seeking a positive confirmation that that is the address CLS hold for them. As a result, CLS can maintain the cohorts' latest details on the BCS70 database. In the event of the annual mailing not reaching the participant it is returned to CLS as a 'return to sender'. CLS will attempt to trace all these returns but if CLS cannot locate the participants then they are flagged on the database as a 'gone-away'. NHS England may potentially hold a more recent address and provide CLS with an opportunity to invite the cohort to re-join the study. CLS will send the details of approximately 12,000 cohort members to be linked to the NHS England Personal Demographics Service (PDS) dataset. This number excludes those who have died and those who have requested to be withdrawn from the study. NHS England will supply new addresses for study members who can be matched to the PDS dataset.

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 51 Survey. CLS have also contracted Formara to send mailing to participants on behalf of CLS.

CLS used the new addresses to invite participants to continue participating in the study. This will include sharing addresses with NatCen and Formara so that participants can be invited to take part in future activities organised by the study. Further details about exactly how addresses will be used are provided below in Section 5b.

If a study member makes clear that they do not wish to take part in the study this is flagged on the CLS 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.

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:

(a) 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.

(b) 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.

As University College London (UCL) determines the purposes and means of personal data processing under this agreement, they are the sole Data Controller who will also process data. Natcen and Formara are Data Processors.

UCL's legal basis for processing (acquiring, linking and sharing) personal data is for a public task under GDPR Article 6(1)(e) i.e. processing is necessary for the performance of a task carried out in the public interest (as is made explicit to participants in the information leaflets provided). UCL also process special categories of personal data for research under GDPR Article 9(2)(j) i.e. 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 the Confidentiality Advisory Group to access this data without consent. CLS has also received Research Ethical Committee (REC) approval for tracing participants via NHS England.

Research using the data from this study will contribute to a body of evidence which have the potential to inform government and result in policy change in various areas including health. As a result, this has the potential to benefit the public in general.

Participants are aware that the study will attempt to trace them and CLS are confident that many of those newly traced via the NHS will be happy to take part. CLS also uses its own methods for tracing cohort members for example, asking the named stable contacts (relative, neighbour or friend) for the participant’s new address.

The Economic and Social Research Council (ESRC) are the funder for this study. No data received under this agreement will be shared with the funder.

CLS is contracting Formara Ltd to send general mailing to CLS participants. These involve mailings on the occasion of their birthday, where CLS will send participants birthday cards, invitations to activities organised by the study as well as invitation to participate in the next sweep of data collection, etc. For this purpose CLS will share the cohort members' personal information with Formara, (name, address) these may contain some of the addresses provided by NHS England to CLS. Formara will delete all information after the activity has been completed.

The CLS at UCL will transfer data to NHS England. The data will consist of identifying details (specifically NHS

Number, Date of Birth, full name, Postcode, Sex and a unique person ID) for the cohort to be linked with NHS England 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.

NHS England data will provide the relevant records from the Demographics dataset to UCL.

The data will contain directly identifying data items including Full Names, NHS Number, Date of Birth, Postcode, Gender which are required to facilitate contact with participants.

The data will also contain:

- CLS identifier

- Fact of Death (and embarkations)

- Date of address registration or update

- Reason for removal date

- Reason for removal

The variables requested are required for validation (verify participants' details in the event of matching errors). The 'Reason for removal date' is used to compare the address confirmation data CLS holds on their database. If CLS hold an address which has been confirmed more recently than the ‘reason for removal date’ they receive from NHS England, they will retain the address in their database but if the ‘reason for removal date’ from NHS England is later than the address confirmation date they hold then they will update their records.

CLS require identifiers in the circumstance that any discrepancies arise. This is because there are instances where CLS receive identifying details that do not accurately match the cohort member. Using the identifying details CLS will be able to assess whether the details they hold correctly associate with the participant. For example, CLS have had instances where the names they hold and NHS England hold match but the Date of Birth does not match and, in this situation, they would use NHS Number and full name to determine whether it is the correct participant.

The data will be stored on servers at UCL. UCL uses offsite back-up services provided by VIRTUS Data Centres. UCL stores data on the Cloud provided by Amazon Web Services.

The data file supplied by NHS England will be processed within CLS and entered into CLS’s secure confidential address database. The data will remain in the DSH at all times.

Access is restricted to employees or agents of UCL, NatCen, and Formara.

Addresses will be used by Natcen to invite study members to take part in the current survey and future surveys. Formara will use the data to send mailing to participants on behalf of CLS.

No other data will be linked to the NHS England data received.

All personnel accessing the data have been appropriately trained in data protection and confidentiality.

The Data will be accessed by authorised personnel via remote access.

The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

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.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

The data will always remain on the servers at UCL CLS. Personnel are prohibited from downloading or copying data to local devices. Staff using the DSH complete annual training and regularly review data access arrangements ensuring data are only limited to those authorised to access it.

Remote processing will be from secure locations within the UK. The data will not leave the UK at any time.

The data will not be linked with any other data. However, it will be compared with existing BCS70 data. If cohort members confirm their address this will be recorded on the CLS database as a confirmed address. If the letter is ‘returned to sender’ this will also be recorded on the CLS database. There will also be cases where no confirmation is received and their letter is not returned to sender.

Before the commencement of fieldwork or other study activity which requires the sharing of the data with one or more data processors, a ‘sample file’ will be sent to the processors (named in this agreement) which will include the names and addresses of all cohort members to be invited to participate in the activity. The sample file will include names and addresses for all study members with a confirmed address AND those addresses supplied by NHS England which were neither confirmed nor returned to sender. On some occasions, addresses with a 'return to sender’ flag will also be sent to processors depending on the cohort member's previous participation.

The addresses supplied by NHS England under this agreement helped to boost the sample size and to increase the data collection at age 51. Prior to a new survey collection, there are always a number of people who CLS will have lost contact between the previous surveys and the new upcoming survey. The output of the demographic data will be the participation in the survey, for those participants who wouldn’t otherwise have participated in the age 51. In the BCS70 Age 42 Survey which was conducted in 2012 we achieved almost 800 interviews with participants who had been newly traced to an address supplied by NHS England – and this included almost 600 interviews with study members who had not previously taken part in the study for over 10 years. This shows very clearly the value of tracing participants in this way. CLS is waiting to receive information from Natcen to confirm how many NHS addresses provided were correct and enabled contact with the cohort members for the current sweep. CLS will use the newly obtained addresses to send future mailings and invitations to future surveys.

The main outcome for the study is the latest sweep, Age 51. This will be a fully documented, anonymised research dataset which will be archived with the UK Data Service to provide a strategically important resource for UK Social Science, including researchers in health and social care. CLS expect this data will be available for researchers to us in the autumn 2024. For clarity, the data stored on UK Data Service does not include NHS England data but responses from participants of the study.

The scientific priorities and questionnaire content of the survey were elaborated and developed in consultation with the academic and policy community with the aim of collecting both information relevant to their lives at age 51 and to later life outcomes, as well as repeat measures of topics covered at age 51. CLS will continue to prospectively harmonise the content with other comparable cohorts, particularly those in the UK, by drawing on comparable measures at a similar age. All surveys are overseen by the CLS Strategic Advisory Board (SAB) which contains representatives from UK research and Innovation (UKRI), Wellcome Trust, Medical Research Council, the scientific community, and government departments. The SAB provide high level strategic oversight for CLS to ensure the cohort studies led by the centre are developed, managed, and maintained in a manner that maximises their benefit as long-term scientific resources of importance both nationally and internationally, while protecting participants' interests. The SAB ensure that the content is closely aligned with research priorities, as well as the areas of research interest (ARIs) published by government departments. CLS reflect these priorities when deciding on the major themes which CLS intend to cover at the sweep.

In additional to the creation of this rich database which will be BCS70 Age 51, CLS will continue to produce outputs from the study via the UK Data Service in the form of aggregated reports with small numbers suppressed, for the benefit of the wider research community, as previous interest in BCS70 data has proven to be sought in a large scope of research areas.

CLS will also publish papers in a range of journals; however, it is not possible to provide detail at this point as to precisely which journals and dates, but the intention is to produce outputs along the same lines as those produced after the previous sweep. All scientific papers using the BCS70 data are published on the CLS Bibliography page online.

https://www.bibliography.cls.ucl.ac.uk/Bibliography.aspx?sitesectionid=647&sitesectiontitle=Bibliography

Requesting NHS England to provide up to date contact details and being able to keep the information for future sweeps, will allow the researchers to re-contact the participants who CLS have may have lost contact 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.

The information collected during the age 51 Survey as well as in previous and future sweeps may 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 BCS46 data is now available for researchers to access via the UK Data Service , providing an important resource for UK Social Science, including researchers in health and social care. This 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 midlife. Many of the measures were included in CLS’ other study the NCDS age 44 biomedical sweep, which will allow for cross cohort comparisons. A link to the dataset is provided here https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8547

The use of the data may 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/

-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’

In the BCS70 Age 42 Survey which was conducted in 2012 UCL CLS achieved almost 800 interviews with participants who had been newly traced to an address supplied by NHS England – and this included almost 600 interviews with study members who had not previously taken part in the study for over 10 years. This shows very clearly the value of tracing participants in this way.

The addresses obtained in previous versions of this agreement were also very useful to invite study members (BCS70 age 46 sweep) to take part and re-engage with the studies. Using addresses provided by the NHS England helped CLS get in touch with those cohort members who would otherwise not be able to take part in a new survey.

The BCS46 data is now available for researchers to access via the UK Data Service, providing an important resource for UK Social Science, including researchers in health and social care. A link to the dataset is provided here https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=8547