ONS Longitudinal Study

Office for National Statistics (ONS) · Agency/Public Body

Expired The latest version ended on 30 June 2023. The September 2026 register still lists the agreement, but its term has passed.

Reference: DARS-NIC-194340-D6F3B
Latest version: v3.2
Term of latest version: 14 February 2023 to 30 June 2023
Start date: 15 October 2020
Data controller: Sole Data Controller
Commercial purposes: No
Sublicensing: Yes
Files released to date: 22

Why the data was released

Objective for processing

**This is a short term extension to permit the retention of data already held by the Office for National Statistics (ONS)**

The Office for National Statistics (ONS) Longitudinal Study (LS) is the largest longitudinal data resource in England and Wales. It contains linked census and life events data for an approximate 1% sample of the population of England and Wales.

The LS has linked records at each Census since 1971 for people born on one of four selected dates in a calendar year. These four dates were used to update the sample at the 1981, 1991, 2001, 2011 and 2021 Censuses. The LS is largely representative of the population as a whole.

At each Census point more than 500,000 LS members, usually resident in England and Wales, are identified. Over the 40 years of the longitudinal study, data on approximately 1.2 million members has been collected which includes members who have since died but are retained in the study.

Life events data are also linked for LS members including births to mothers in the LS sample, deaths of LS members and LS members becoming widowed. New LS members enter the study through birth and immigration (if they are born on one of the four selected birth dates).

Purpose 1 – maintenance of the LS Research Database

The LS Research Database contains pseudonymised patient level data with unique LS Member IDs being used in place of identifying data. NHS England holds the master index and has the ability to link LS Member IDs to identifiable data. NHS England supports the LS by providing data – some of which are integrated into the LS Research Database and some of which are used to quality assure the LS dataset and resolve anomalies.

The data provided feeds into annual LS processing activity. Once processing is complete, a version of the database which is suitable for research, is made available to authorised researchers in a controlled environment.

Purpose 2 – providing access to the LS Research Database

The ONS actively promotes wide use of the LS Research Database, while maintaining the confidentiality of individuals in the LS sample. To ensure confidentiality the LS Research Database is held on an access controlled SQL Server within the Secure Research Service (SRS) and can only be accessed via the Secure Research Service. Only statistical analysis or data tabulations are released to researchers though an output clearance process.

Researchers need to make an application to access the LS for research purposes. A user support service is available to help researchers. This includes:

• advice on sample sizes and the suitability of the LS for particular projects

• advice on data content and linkage issues

• helping applicants through the application procedure

• identifying the variables and the study population to be included in an extract

• making data extracts

• transforming data and producing the tables or files necessary for analysis

• advising on clearance procedures and confidentiality rules

No direct identifiers are included in the LS Research Database. Variables that present the highest risk of identity disclosure (e.g. date of birth, low level geography codes) are not available to researchers in their raw form, but can be used to derive or link variables that carry a low disclosure risk.

The LS Research Database is made available for use by researchers under strictly controlled conditions. The controls in place are:

i) All LS project applications both from internal researchers and those applying for sub-license use of the data need to be approved by the Research Accreditation Panel (RAP).

The RAP was established by the UK Statistics Authority to oversee the independent accreditation of processors, researchers and research projects under the Digital Economy Act 2017 legislation. The Panel provide the governance of the accreditation of researchers and processors, through overseeing the training of researchers and the security standards, policies and procedures that processors must comply with. The RAP also assesses each project application to access de-identified data against the following criteria:

i. Is there public benefit?

ii. Is there demonstrable analytical merit?

iii. Is the project feasible?

iv. Are any relevant privacy implications sufficiently mitigated?

v. Has the project successfully completed a formal ethical review?

The RAP consists of independent members, representatives from government departments, and representatives from the devolved administrations.

ii) Researchers are only given access to a bespoke data extract as defined in their project application. This typically involves a subset of people from the LS sample, and only the variables that are needed for their research.

iii) The data can only be accessed through ONS’s Secure Research Service (SRS). SRS users have no means to import or export data, or to print or copy and paste the data they are using.

iv) When a researcher wishes to take outputs out of the SRS, they make a formal request and their outputs are assessed. They are only released from the SRS if they present no risk of the identification of an individual.

v) In order to work with the data in the SRS, a researcher must be accredited as an Accredited Researcher.

Any transgression by a researcher with regards to these data may lead to prosecution under the Statistics & Registration Service Act 2007 and could lead to a two-year prison sentence.

Purpose 3 - adding 2021 Census data to the LS

ONS conducts a census in England and Wales every ten years and aims to link census data from LS members into the LS Research Database. NHS England provides the tracing/matching service, under contract, that enables census data to be linked to the other data held in the LS.

Similarly to Process 1, once processing is complete and the full range of census data has been added to the ONS system, a new version of the database is made available to authorised researchers in a controlled environment.

The census data provides a comprehensive picture of each LS member who responded. Census data is used in virtually all LS projects as it's the source for information about key characteristics of interest such as country of birth, occupation, social class, ethnicity, religion and family structure.

The output from this processing by NHS England also makes a vital contribution to quality assuring statistical processes and outputs from the 2021 Census. In summary:

i. Cases where LS members flagged at NHS England are not matched to a 2021 Census response provides information on possible non-response to the census (census undercount).

ii. Cases where more than one census response is matched to the same LS member by NHS England provides information on possible multiple census responses for the same person (census overcount).

iii. ONS also plans to send data from the Census Coverage Survey (CCS) for tracing by NHS England. CCS records are matched against 2021 Census records by ONS as one of the statistical processes in the creation of census outputs. The results of NHS England tracing an LS sample of CCS records will provide ONS with an independent source of data to help evaluate the matching operation at ONS.

LS data, including data originating from NHS England, are held and processed in two separate environments at ONS.

Environment 1 is a dedicated part of ONS’s corporate infrastructure that can only be accessed by members of the LS Development Team (LSDT) and technical support staff from the Digital Services & Technology team at ONS. All are substantive employees of ONS. The data sent to the LSDT by NHS England is processed and stored in this environment. It is this part of the LS infrastructure that ONS plans to move from Crown Hosting Data Centres (CHDC) servers to cloud-based infrastructure provided by Amazon Web Services (AWS). CHDC and AWS are included as Data Processors in this Agreement, and within the processing and storage location section. Security assurance documentation for CHDC and AWS has been supplied to NHS England and approved by the NHS England Security Team.

Environment 2 is the Secure Research Service (SRS) which runs on cloud-based infrastructure provided by UKCloud. UKCloud is included within the data processor, processing location and storage location sections of this Agreement.

All implementation and maintenance services related to the SRS’s use of UKCloud infrastructure are provided by Equiniti. Equiniti is therefore included within the data processor, processing location and storage location sections of this Agreement.

Processing activities

ONS have sent files of births, deaths and census events for tracing or flagging at NHS England. NHS England returned files with LS numbers and success outcomes.

NHS England provide event reports annually for LS members who have had death notifications, or who have embarkation or re-entrant postings. A person with a LS birth date who is new to the NHS will be added as an 'Immigrant' record.

Additionally, NHS England provide Annual Reports for LS members and for people with LS dates of birth, who haven't been flagged as an LS Member which includes posting information, removal information, postcode sector information, and country of birth (where declared).

ONS add these records to the ONS Longitudinal Study, which is be made available for researchers via the ONS Secure Research Service.

---------------------------------------------------------

Purpose 1 – maintenance of the LS Research Database

The following activities take place within an annual cycle:

1. Event Notification to the LS

Annually, NHS England generates a file of potential new members and events for LS members flagged on NHS England’s Cohort Management System. NHS England transfers this file to the LS Development Team (LSDT) for processing. Once processed, the data files are destroyed.

This file contains:

• all the death, enlistment, embarkation (to destinations abroad and to Northern Ireland) and re-entrant events recorded on PDS for individuals already flagged as LS members, and

• Immigrant events for potential new LS members (i.e. individuals who have an LS date of birth but are not already LS members).

2. Flagging New LS Members in the Cohort Management System (CMS)

At regular intervals, the LSDT sends NHS England listings of new LS members who are new births or immigrants with an LS date of birth, with LS numbers assigned by LSDT. NHS England flags the records on CMS (i.e. they store the LS numbers linked against the relevant patient records in CMS).

3. Tracing of probable LS members on CMS

a. Births to Sample Mothers and Widow(er)hoods

Annually, the LSDT sends separate listings to NHS England of births for which the mothers have LS dates of birth and deaths for which the spouses have LS dates of birth. NHS England traces the respective parents/spouses in CMS. The parents/spouses should be current members of the LS cohort because they each have an LS date of birth. Where the records of the parents/spouses are found and are linked to an LS flag, NHS England reports their LS numbers to the LSDT.

b. Deaths tracing

The LSDT sends annual listings to NHS England of deaths registrations of people with LS dates of birth that the LSDT have identified from data held by ONS that have not previously been notified to the LSDT by NHS England. NHS England traces the records of the people in CMS. Where the relevant patient records are found and are linked to an LS flag, NHS England returns the corresponding LS numbers to the LSDT. Where the patient records are traced but found not to be a current LS member, NHS England notifies the LSDT.

4. Query Resolution

a. LS deaths

NHS England investigates cases notified by the LSDT where there are inconsistencies between the deaths records from ONS and NHS England.

5. Various

NHS England also investigates ad hoc queries from LSDT regarding data quality. These all relate to members of the LS cohort or individuals believed to have LS dates of birth.

6. LS Annual report

Annually (or as requested) NHS England provides the LSDT with the LS Annual Reports. These reports list patient registration data of LS Members and non-members with an LS date of birth. The files detail Posting Changes, Postcode sector changes or Removals in CMS.

The data to be integrated into the LS Research Database are initially processed by the LS Development Team (LSDT) at ONS. Only members of the LSDT have access to the raw data. A new version of the LS Research Database is created each year on the completion of this processing activity.

Purpose 2 – providing access to the LS Research Database

When a new LS research project is approved and set up, a bespoke extract of data from the LS Research Database is created for the research team. They can only access these data via a dedicated project area set up for them within ONS's Secure Research Service (SRS). The SRS is hosted at a data centre within the UK mainland. The SRS environment has been assured by ONS’s Information Assurance team to hold and process data with a security classification of OFFICIAL for an individual record and OFFICIAL-SENSITIVE for a large aggregation of records. A researcher must be accredited as an Accredited Researcher before being allowed to work with data in the SRS.

Two groups of people have the ability to create bespoke data extracts from the LS Research Database for new research projects:

i) Five members of the Centre for Longitudinal Study Information & User Support (CeLSIUS) team (reducing to three members in 2022).

- The Centre for Longitudinal Study Information & User Support (CeLSIUS) are funded by the Economic & Social Research Council to provide free guidance and support to UK-based users of the LS from the academic, public and voluntary sectors.

- Management/leadership and administrative support of the CeLSIUS team is provided by staff based at University College London (UCL).

- The User Support Officers (USOs), i.e. those delivering the support service to users, are also UCL employees. However, they carry out this work at ONS’s London office at Drummond Gate, Pimlico using ONS-issued accounts on ONS devices linked to ONS infrastructure.

- Since the start of the COVID-19 pandemic (26 February 2021) USO's are mostly working from home using ONS-issued laptops, in the same way that most ONS staff are working from home. They connect to their ONS accounts through the ONS VPN and the SRS is available via their standard desktop. The Research Support & Data Access team at ONS have issued all staff needing to access the SRS from home with a specific set of Security Operating Procedures which they must read, sign and return before access from home is granted. The CeLSIUS team are treated in exactly the same way as ONS staff throughout this process. These temporary arrangements have been reviewed and approved by ONS’s Information Assurance team.

- Regarding access to data - the CeLSIUS USOs do not have access to the full LS dataset.

- The version that the CeLSIUS team has access to is missing a number of key variables that present a raised disclosure risk, namely date of birth, full date of death and geography codes identifying small geographical areas (the lowest level they have access to is Local Authority level).

- CeLSIUS USOs only access these data via ONS’s Secure Research Service (SRS) environment. In the SRS, all data are held and processed on secure servers – no data is held on the device being used to access the SRS. CeLSIUS USOs do not have the ability to take any data out of the SRS.

- When a CeLSIUS-supported researcher and project have successfully passed all approvals processes, CeLSIUS USOs create a bespoke data extract for the researcher that only contains the data subjects and variables specified in their project application. This data extract is placed in the researcher’s dedicated project area within the SRS.

- CeLSIUS USOs are also involved in checking researchers’ outputs that they wish to have provided to them outside of the SRS. Each output is checked by two people – the first can be a CeLSIUS USO and the second will always be an ONS member of staff. These checks make sure that anything released from the SRS is absolutely safe and doesn’t present any risk of disclosing the identity of any individual data subject.

- All CeLSIUS USOs have been security cleared to Baseline Personnel Security Standard (BPSS).

ii) The LSDT provide an equivalent service for researchers from all other sectors, as well as researchers from ONS itself.

Purpose 3 - adding 2021 Census data to the LS

In order to link census data to the LS, ONS will send details from census records to NHS England where one of the four LS birth dates has been given. ONS will assign a new unique LS number to each record prior to sending. If NHS England identifies a record as an existing LS member, it will send the record back with the existing LS number appended. If NHS England finds the person and they aren't already flagged as an LS member, it will add them to the study cohort by flagging them as an LS member, will note the newly issued LS number, and will inform ONS of this outcome.

The data sent to NHS England will be restricted to the variables required to carry out this function - fields containing names, address details, sex and date of birth. Additional useful indicators such as a flag denoting someone as a full-time student will also be sent.

NHS England will also be sent similar information relating to people living in the same household as someone with an LS birth date, plus redacted images of the census forms where the information was captured on paper. This additional information is to be used in the clerical part of processing to help make matching decisions in difficult cases.

The data returned by NHS England will be integrated into the LS Research Database. This will include a number of NHS England variables for each matched record. These are:

i. The home postcode registered on the NHS system.

ii. An NHS administrative geography code identifying where the individual is registered.

iii. Indicators of any discrepancies between the 2021 Census record and the matched NHS record, such as a different date of birth.

iv. Indicators showing that the 2021 Census record was matched to an NHS record for someone NHS England has recorded as having died or being resident in Scotland.

Low level geography variables, such as home postcode, are never made available to researchers. They are held on a database that is accessible only to members of the LS Development Team (LSDT) at ONS. Low level geography variables are typically used to attach ecological data relating to where people live as part of a research project, for example measures of deprivation. The attachment of these data will always be carried out by members of the LSDT and the data made available to a researcher will always be provided in a format that prevents identification of a small area. For example, ONS may provide a researcher with a variable that identified the decile of the level of deprivation for each individual’s home postcode.

Technical infrastructure:

LS data, including data originating from NHS England, are held and processed in two separate environments at ONS.

Environment 1 is a dedicated part of ONS’s corporate infrastructure that is protected by enhanced security measures. This can only be accessed by members of the LS Development Team (LSDT) and technical support staff from the Digital Services & Technology team at ONS. All are substantive employees of ONS. The data sent to the LSDT by NHS England is processed and stored in this environment. The master version of the LS database is held here. It is this part of the LS infrastructure that ONS plans to move from Crown Hosting Data Centres (CHDC) servers to cloud-based infrastructure provided by Amazon Web Services (AWS). CHDC and AWS are included as Data Processors in this Agreement, and within the processing and storage location section. Security assurance documentation for CHDC and AWS has been supplied to NHS England and approved by the NHS England Security Team.

Environment 2 is the Secure Research Service (SRS). The SRS gives accredited researchers secure access to pseudonymised, unpublished data in order to work on research projects for the public good. The SRS has been accredited as a Digital Economy Act (DEA) 2017 processor by the UK Statistics Authority for the preparation and provision of data for research purposes. The SRS runs on cloud-based infrastructure provided by UKCloud. UKCloud is included within the data processor, processing Location and storage location sections of this Agreement. Security assurance documentation for UKCloud has been supplied to NHS England and approved by the NHS England Security Team. All implementation and maintenance services related to the SRS’s use of UKCloud infrastructure are provided by Equiniti. Equiniti is included in the within the data processor, processing Location and storage location sections of this Agreement.

From May 2022, ONS intends to move the processing of Longitudinal Study (LS) data from servers provided by Crown Hosting Data Centres Ltd. to a cloud-based infrastructure provided by Amazon Web Services (AWS).

Expected output

ONS Outputs:

Purpose 1 – maintenance of the LS Research Database

The output is the maintenance of the LS Research Database. The LS Development Team operates an annual processing cycle resulting in a new version of the LS Research Database being released each year.

Purpose 2 – providing access to the LS Research Database for research

The outputs of providing access to the LS Research Database for approved projects are individual project research outputs. All such outputs contain aggregated data that have been checked by ONS to ensure there is no risk of identifying any individual. When submitting proposed outputs to ONS for clearance, researchers must show all underlying, unweighted counts, which should adhere generally to a threshold of ten. Outputs with counts below the threshold may be considered in exceptional cases, where the researcher can demonstrate the necessity to their research and that the output is still safe. Research outputs are commonly journal papers, research reports and results, and presentations at conferences.

Recent examples of published LS research include:

i) Association of childhood out-of-home care status with all-cause mortality up to 42 years later by Murray, Lacey, Maughan and Sacker published in BMC Public Health

bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-020-08867-3

ii) (Un-)healthy ageing in local areas: England and Wales 2001 to 2011 by Norman, Murray, Shelton and Head presented at the 2021 conference of the British Society for Population Studies

www.researchgate.net/publication/354601659_PN-HOPE-BSPS-Sep-2021?channel=doi&linkId=6141e9bc2db97e68051c00e2&showFulltext=true

iii) Associations between commute mode and cardiovascular disease, cancer, and all-cause mortality, and cancer incidence, using linked Census data over 25 years in England and Wales: a cohort study by Patterson, Panter, Vamos, Cummins, Millett and Laverty published in The Lancet Planetary Health

www.thelancet.com/journals/lanplh/article/PIIS2542-5196(20)30079-6/fulltext

A list of research areas in which the LS has been used can be accessed online. To date there have been in excess of 600 LS publications. See: https://www.ucl.ac.uk/epidemiology-health-care/research/epidemiology-and-public-health/research/celsius/research

Purpose 3 - adding 2021 Census data to the LS

The output is a new version of the LS Research Database incorporating 2021 Census data. Thorough quality assurance and testing will take place before the new data are released to researchers. ONS expects the new data to be released in summer 2023.

Expected measurable benefits

Maintaining the LS Research Database ensures that the benefits of the LS are being utilized as a research resource. Specifically, it enables research into a wide range of topics including health inequality, limiting long term illness, ageing and caring. Research findings are regularly published in journals and presented at conferences.

Recent examples of published LS research include:

i) Association of childhood out-of-home care status with all-cause mortality up to 42 years later by Murray, Lacey, Maughan and Sacker published in BMC Public Health

bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-020-08867-3

ii) (Un-)healthy ageing in local areas: England and Wales 2001 to 2011 by Norman, Murray, Shelton and Head presented at the 2021 conference of the British Society for Population Studies

www.researchgate.net/publication/354601659_PN-HOPE-BSPS-Sep-2021?channel=doi&linkId=6141e9bc2db97e68051c00e2&showFulltext=true

www.thelancet.com/journals/lanplh/article/PIIS2542-5196(20)30079-6/fulltext

The LS can be used for several types of analysis, over many different research areas. The studies that make best use of LS data are those that link social, occupational and demographic information to data on life events. Examples include studies of mortality, and fertility patterns. The individual-level data of the LS means that person-years at risk can be calculated for epidemiological studies.

The ability to combine detailed personal characteristics with area characteristics has proved useful in many studies of health, for example, those looking at environmental effects on health, and those on inequalities in health.

Studies of social mobility have examined changing class position by age. Information on co-residents of LS sample members has been used to study inter-generational mobility.

The size of the LS makes it suitable for the study of ageing. Studies have used the information collected on the co-residents and family status of LS sample members to examine changes to household and family arrangements that come with age.

The LS is used by ONS to produce National Statistics on 'Trends in life expectancy by the National Statistics Socio-economic Classification'. These National Statistics are key measures used by the Department of Health and Social Care and agencies such as Public Health England to monitor progress in meeting legal duties on health inequalities.

Benefits reported so far

1. Health and Mortality: How large are inequalities between people from different backgrounds?

When the ONS Longitudinal Study (LS) was established in 1974 a primary goal was to compile new information on differences in mortality between people in different occupations. Since then, it has been used to provide unique information to support a series of major reports for government on health and mortality:

• Inequalities In Health, 1980 (The Black Report) for the Department of Health and Social Security:

https://pubmed.ncbi.nlm.nih.gov/7118327/

• The Health Divide: Inequalities In Health In The 1980s, 1987 (The Whitehead Report) for the Health Education Council:

• Independent Inquiry into Inequalities in Health Report, 1998 (The Acheson Report) for the Department of Health:

www.archive.official-documents.co.uk/document/doh/ih/contents.htm

• Fair Society Healthy Lives (The Marmot Review) for the Department of Health:

http://www.instituteofhealthequity.org/resources-reports/fair-society-healthy-lives-the-marmot-review

Each of these reports has used data that is only available from the LS, which is unique in both its large number of records, and its long timespan. Focusing on the most recent Marmot Review, its information includes:

• Standardised limiting illness rates in 2001 at ages 16–74, by education level recorded in 2001

• Life expectancy at birth by social class, a) males and b) females, England and Wales, 1972–2005

• Standardised limiting illness rates at ages 55 and over in 2001 by the educational level they had in 1971

2. Life Expectancy and Pensions: How long do people from different social backgrounds live?

Increasing life expectancy has become recognised as a major policy issue in recent years, with one particular concern being the implications for pensions. The Pensions Commission, led by Lord Turner, was appointed by the government in December 2002 with the remit of keeping under review the adequacy of private pension saving in the UK, and advising on appropriate policy changes, including on whether there is a need to “move beyond the voluntary approach”.

National Statistics on ‘Trends in Life Expectancy at 65 by socio-economic position’ were supplied to the commission to demonstrate how life expectancy varies for different socio-economic groups. These National Statistics can only be produced and published using the LS: no other data source has the LS’s combination of a large sample size, its long time period, and such a very high retention of members.

This series of National Statistics has been running since 1982. ONS is currently working on the next release which will include data covering 2012 to 2016. The previous release is published here:

https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/lifeexpectancies/bulletins/trendinlifeexpectancyatbirthandatage65bysocioeconomicpositionbasedonthenationalstatisticssocioeconomicclassificationenglandandwales/2015-10-21

3. Adult social care: What is the extent of the need?

The need for, and cost of, adult social care has received increasing political attention for more than a decade. The Royal Commission on the Funding of the Long Term Care of the Elderly reported in 1999, and the Commission on Funding of Care and Support, chaired by Andrew Dilnot, was set up in 2010 with the task of making recommendations on how to achieve an affordable and sustainable funding system for care and support for all adults in England, both in the home and in other settings.

Professor Emily Grundy was a member of the Dilnot Commission’s Academic Panel and submitted a paper in evidence: Survivorship 2001-2008 among residents of communal establishments in 2001 in England & Wales: Results from the Office for National Statistics Longitudinal Study.

The submission used data from the LS on the survival of older people who in the 2001 Census were recorded as residents of residential care homes, nursing homes, or other types of communal establishment, and examined differentials in the survival of this population by characteristics including broad type of establishment (residential, nursing, or other); gender and marital status in 2001. It also used information on place of death to assess the assumption that residents in communal establishments of various types in 2001 remained in institutional care throughout the follow-up period (from the 2001 Census to the end of 2008).

4. Current Research

The LS continues to be widely used, helping health and social researchers investigate and analyse a wide range of topics. Current projects include:

• Mortality variations over the rural urban continuum: context, compositional or migratory - Rebecca Allan, Paul Williamson, Hill Kulu

• Inequalities in cumulative exposure to air pollution in the home and workplace, and their health impacts: exploring socio-economic and ethnic differences over the lifecourse - Gemma Catney, Fran Darlington-Pollock

• Care providers, care receivers: a longitudinal perspective - Emily Grundy

• Chronic health effects of air pollution on respiratory and cardiovascular mortality in the UK - Anna Hansell, Paul Elliott, David Strachan, Ravi Maheswaran, Marta Blangiardo, Rebecca Ghosh, Chloe Morris

• Early life and intergenerational transmission of health - Genevieve Jeffrey, Elisabetta De Cao, Alistair Mcguire

• The influence of early life health and nutritional environment on later life health and morbidity - Melanie Luhrmann, Tanya Wilson

• Mortality of immigrants and their descendants in Britain - Matthew Wallace, Hill Kulu, Paul Williamson, Gemma Catney

• Do maternal characteristics have an impact on birthweight of liveborn child? - Jitka Pikhartova

Datasets on the latest version

Legal basis for provision: Health and Social Care Act 2012 - s261(5)(d); Other-Section 45A of The Statistics and Registration Service Act 2007 (SRSA) as amended by the Digital Economy Act 2017

Datasets approved under DARS-NIC-194340-D6F3B-v3.2
Dataset	Type of data	Sensitivity	Frequency	Confidential data
Demographics	Identifiable	Non-Sensitive	One-Off	Statutory exemption to flow confidential data without consent

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 not applied to any of the 22 files released under this agreement, across every version. About opt-outs

No files recorded as released under the latest version. 22 were released under earlier versions, shown in the version history.

Version history

The register lists each renewal of this agreement as a separate row. This site has 4 versions.

DARS-NIC-194340-D6F3B-v3.2 14 February 2023 to 30 June 2023

Title: ONS Longitudinal Study
Commercial: No
Sublicensing: Yes
Datasets: 1
Files released: 0

Datasets: Demographics

What changed from DARS-NIC-194340-D6F3B-v2.6

Text removed is ~~struck through~~; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-194340-D6F3B-v2.6
Field	Was	Became
Start date	~~2022-05-06~~	2023-02-14
End date	~~2023-02-14~~	2023-06-30

Objective for processing

**This is a short term extension to permit the retention of data already held by the Office for National Statistics (ONS)** [5 paragraphs unchanged] The LS Research Database contains pseudonymised patient level data with unique LS Member IDs being used in place of identifying data. NHS ~~Digital~~ England holds the master index and has the ability to link LS Member IDs to identifiable data. NHS ~~Digital~~ England supports the LS by providing data – some of which are integrated [8 words unchanged] which are used to quality assure the LS dataset and resolve anomalies. [27 paragraphs unchanged] ONS conducts a census in England and Wales every ten years and aims to link census data from LS members into the LS Research Database. NHS ~~Digital~~ England provides the tracing/matching service, under contract, that enables census data to be linked to the other data held in the LS. [2 paragraphs unchanged] The output from this processing by NHS ~~Digital~~ England also makes a vital contribution to quality assuring statistical processes and outputs from the 2021 Census. In summary: i. Cases where LS members flagged at NHS ~~Digital~~ England are not matched to a 2021 Census response provides information on possible non-response to the census (census undercount). ii. Cases where more than one census response is matched to the same LS member by NHS ~~Digital~~ England provides information on possible multiple census responses for the same person (census overcount). iii. ONS also plans to send data from the Census Coverage Survey (CCS) for tracing by NHS ~~Digital.~~ England. CCS records are matched against 2021 Census records by ONS as one of the statistical processes in the creation of census outputs. The results of NHS ~~Digital~~ England tracing an LS sample of CCS records will provide ONS with an independent source of data to help evaluate the matching operation at ONS. LS data, including data originating from NHS ~~Digital,~~ England, are held and processed in two separate environments at ONS. Environment 1 is a dedicated part of ONS’s corporate infrastructure that can [26 words unchanged] substantive employees of ONS. The data sent to the LSDT by NHS ~~Digital~~ England is processed and stored in this environment. It is this part of [43 words unchanged] Security assurance documentation for CHDC and AWS has been supplied to NHS ~~Digital~~ England and approved by the NHS ~~Digital~~ England Security Team. [2 paragraphs unchanged]

Processing activities

ONS have sent files of births, deaths and census events for tracing or flagging at NHS ~~Digital.~~ England. NHS ~~Digital~~ England returned files with LS numbers and success outcomes. NHS ~~Digital~~ England provide event reports annually for LS members who have had death notifications, [15 words unchanged] is new to the NHS will be added as an 'Immigrant' record. Additionally, NHS ~~Digital~~ England provide Annual Reports for LS members and for people with LS dates [13 words unchanged] information, removal information, postcode sector information, and country of birth (where declared). [5 paragraphs unchanged] Annually, NHS ~~Digital~~ England generates a file of potential new members and events for LS members flagged on NHS ~~Digital’s~~ England’s Cohort Management System. NHS ~~Digital~~ England transfers this file to the LS Development Team (LSDT) for processing. Once processed, the data files are destroyed. [4 paragraphs unchanged] At regular intervals, the LSDT sends NHS ~~Digital~~ England listings of new LS members who are new births or immigrants with an LS date of birth, with LS numbers assigned by LSDT. NHS ~~Digital~~ England flags the records on CMS (i.e. they store the LS numbers linked against the relevant patient records in CMS). [2 paragraphs unchanged] Annually, the LSDT sends separate listings to NHS ~~Digital~~ England of births for which the mothers have LS dates of birth and deaths for which the spouses have LS dates of birth. NHS ~~Digital~~ England traces the respective parents/spouses in CMS. The parents/spouses should be current members [17 words unchanged] the parents/spouses are found and are linked to an LS flag, NHS ~~Digital~~ England reports their LS numbers to the LSDT. [1 paragraph unchanged] The LSDT sends annual listings to NHS ~~Digital~~ England of deaths registrations of people with LS dates of birth that the [7 words unchanged] ONS that have not previously been notified to the LSDT by NHS ~~Digital.~~ England. NHS ~~Digital~~ England traces the records of the people in CMS. Where the relevant patient records are found and are linked to an LS flag, NHS ~~Digital~~ England returns the corresponding LS numbers to the LSDT. Where the patient records are traced but found not to be a current LS member, NHS ~~Digital~~ England notifies the LSDT. [2 paragraphs unchanged] NHS ~~Digital~~ England investigates cases notified by the LSDT where there are inconsistencies between the deaths records from ONS and NHS ~~Digital.~~ England. [1 paragraph unchanged] NHS ~~Digital~~ England also investigates ad hoc queries from LSDT regarding data quality. These all relate to members of the LS cohort or individuals believed to have LS dates of birth. [1 paragraph unchanged] Annually (or as requested) NHS ~~Digital~~ England provides the LSDT with the LS Annual Reports. These reports list patient [13 words unchanged] The files detail Posting Changes, Postcode sector changes or Removals in CMS. [17 paragraphs unchanged] In order to link census data to the LS, ONS will send details from census records to NHS ~~Digital~~ England where one of the four LS birth dates has been given. ONS will assign a new unique LS number to each record prior to sending. If NHS ~~Digital~~ England identifies a record as an existing LS member, it will send the record back with the existing LS number appended. If NHS ~~Digital~~ England finds the person and they aren't already flagged as an LS member, [17 words unchanged] the newly issued LS number, and will inform ONS of this outcome. The data sent to NHS ~~Digital~~ England will be restricted to the variables required to carry out this function [16 words unchanged] a flag denoting someone as a full-time student will also be sent. NHS ~~Digital~~ England will also be sent similar information relating to people living in the [32 words unchanged] clerical part of processing to help make matching decisions in difficult cases. The data returned by NHS ~~Digital~~ England will be integrated into the LS Research Database. This will include a number of NHS ~~Digital~~ England variables for each matched record. These are: [3 paragraphs unchanged] iv. Indicators showing that the 2021 Census record was matched to an NHS record for someone NHS ~~Digital~~ England has recorded as having died or being resident in Scotland. [2 paragraphs unchanged] LS data, including data originating from NHS ~~Digital,~~ England, are held and processed in two separate environments at ONS. Environment 1 is a dedicated part of ONS’s corporate infrastructure that is [33 words unchanged] substantive employees of ONS. The data sent to the LSDT by NHS ~~Digital~~ England is processed and stored in this environment. The master version of the [53 words unchanged] Security assurance documentation for CHDC and AWS has been supplied to NHS ~~Digital~~ England and approved by the NHS ~~Digital~~ England Security Team. Environment 2 is the Secure Research Service (SRS). The SRS gives accredited [69 words unchanged] this Agreement. Security assurance documentation for UKCloud has been supplied to NHS ~~Digital~~ England and approved by the NHS ~~Digital~~ England Security Team. All implementation and maintenance services related to the SRS’s use [13 words unchanged] the data processor, processing Location and storage location sections of this Agreement. [1 paragraph unchanged]

Unchanged: Expected output, Expected measurable benefits, Benefits reported.

DARS-NIC-194340-D6F3B-v2.6 6 May 2022 to 14 February 2023

Title: ONS Longitudinal Study
Commercial: No
Sublicensing: Yes
Datasets: 1
Files released: 0

Datasets: Demographics

What changed from DARS-NIC-194340-D6F3B-v1.2

Text removed is ~~struck through~~; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-194340-D6F3B-v1.2
Field	Was	Became
Start date	~~2021-02-15~~	2022-05-06
End date	~~2022-02-14~~	2023-02-14

Objective for processing

[1 paragraph unchanged] The LS has linked records at each Census since ~~1971,~~ 1971 for people born on 1 one of 4 four selected dates in a calendar year. These 4 four dates were used to update the sample at the 1981, 1991, ~~2001~~ 2001, 2011 and ~~2011~~ 2021 Censuses. The LS is largely representative of the population as a whole. At each Census point ~~approximately~~ more than 500,000 LS ~~members~~ members, usually resident in England and ~~Wales~~ Wales, are identified. Over the 40 years of the longitudinal study, data on approximately 1.2 million members has been collected which includes members who have since died but are retained in the study. ~~Over the 40 years of the longitudinal study, data on approximately 1.2 million members has been collected which includes members who have since died but are retained in the study.~~ Life events data are also linked for LS members including births to mothers in the LS sample, deaths of LS members and LS members becoming widowed. New LS members enter the study through birth and immigration (if they are born on one of the four selected birth dates). Life events data are also linked for LS members including births to mothers in the LS sample, deaths of LS members and LS members becoming widowed. New LS members enter the study through birth and immigration (if they are born on 1 of the 4 selected birth dates). [11 paragraphs unchanged] • transforming data and producing the tables or files necessary for ~~your analyses~~ analysis [4 paragraphs unchanged] The RAP was established by the UK Statistics Authority to oversee the [36 words unchanged] standards, policies and procedures that processors must comply with. The RAP also ~~assess~~ assesses each project application to access de-identified data against the following criteria: [7 paragraphs unchanged] iii) The data can only be accessed through ~~ONS’~~ ONS’s Secure Research Service (SRS). SRS users have no means to import or export data, or to print or copy and paste the data they are using. [11 paragraphs unchanged] LS data, including data originating from NHS Digital, are held and processed in two separate environments at ONS. Environment 1 is a dedicated part of ONS’s corporate infrastructure that can only be accessed by members of the LS Development Team (LSDT) and technical support staff from the Digital Services & Technology team at ONS. All are substantive employees of ONS. The data sent to the LSDT by NHS Digital is processed and stored in this environment. It is this part of the LS infrastructure that ONS plans to move from Crown Hosting Data Centres (CHDC) servers to cloud-based infrastructure provided by Amazon Web Services (AWS). CHDC and AWS are included as Data Processors in this Agreement, and within the processing and storage location section. Security assurance documentation for CHDC and AWS has been supplied to NHS Digital and approved by the NHS Digital Security Team. Environment 2 is the Secure Research Service (SRS) which runs on cloud-based infrastructure provided by UKCloud. UKCloud is included within the data processor, processing location and storage location sections of this Agreement. All implementation and maintenance services related to the SRS’s use of UKCloud infrastructure are provided by Equiniti. Equiniti is therefore included within the data processor, processing location and storage location sections of this Agreement.

Processing activities

ONS ~~will send~~ have sent files of births, deaths and census events for tracing or flagging at NHS Digital. NHS Digital ~~will return~~ returned files with LS numbers and success outcomes. NHS Digital ~~will~~ provide event reports annually for LS members who have had death notifications, or who have embarkation or re-entrant postings. A person with an a LS birth date who is new to the NHS will be added as an 'Immigrant' record. ~~Additionally~~ Additionally, NHS ~~digital will~~ Digital provide Annual Reports for LS members and for people with LS dates [13 words unchanged] information, removal information, postcode sector information, and country of birth (where declared). ONS ~~will~~ add these records to the ONS Longitudinal ~~Study ,~~ Study, which ~~will~~ is be made available for researchers via the ONS Secure Research Service. [8 paragraphs unchanged] 2. Flagging New LS Members ~~on MIDAS~~ in the Cohort Management System (CMS) At regular intervals, the LSDT sends NHS Digital listings of new LS [13 words unchanged] with LS numbers assigned by LSDT. NHS Digital flags the records on ~~MIDAS~~ CMS (i.e. they store the LS numbers linked against the relevant patient records in ~~MIDAS).~~ CMS). 3. Tracing of probable LS members on ~~MIDAS~~ CMS [1 paragraph unchanged] Annually, the LSDT sends separate listings to NHS Digital of births for [13 words unchanged] spouses have LS dates of birth. NHS Digital traces the respective parents/spouses ~~on MIDAS.~~ in CMS. The parents/spouses should be current members of the LS cohort because they [19 words unchanged] an LS flag, NHS Digital reports their LS numbers to the LSDT. [1 paragraph unchanged] The LSDT sends annual listings to NHS Digital of deaths registrations of [24 words unchanged] LSDT by NHS Digital. NHS Digital traces the records of the people ~~on MIDAS.~~ in CMS. Where the relevant patient records are found and are linked to an [20 words unchanged] not to be a current LS member, NHS Digital notifies the LSDT. [6 paragraphs unchanged] Annually (or as requested) NHS Digital provides the LSDT with the LS [17 words unchanged] of birth. The files detail Posting Changes, Postcode sector changes or Removals ~~on MIDAS.~~ in CMS. [2 paragraphs unchanged] When a new LS research project is approved and set up, a [77 words unchanged] a large aggregation of records. A researcher must be accredited as an ~~Approved~~ Accredited Researcher before being allowed to work with data in the SRS. [1 paragraph unchanged] i) Five members of the Centre for Longitudinal Study Information & User Support (CeLSIUS) ~~team.~~ team (reducing to three members in 2022). [2 paragraphs unchanged] - The ~~five~~ User Support Officers (USOs), i.e. those delivering the support service to users, [16 words unchanged] Gate, Pimlico using ONS-issued accounts on ONS devices linked to ONS infrastructure. - At Since the ~~present time during the lockdown due to~~ start of the COVID-19 pandemic (26 February 2021) ~~they~~ USO's are ~~carrying out this work at~~ mostly working from home using ONS-issued laptops, in the same way that most ONS staff [81 words unchanged] temporary arrangements have been reviewed and approved by ONS’s Information Assurance team. [17 paragraphs unchanged] Technical infrastructure: LS data, including data originating from NHS Digital, are held and processed in two separate environments at ONS. Environment 1 is a dedicated part of ONS’s corporate infrastructure that is protected by enhanced security measures. This can only be accessed by members of the LS Development Team (LSDT) and technical support staff from the Digital Services & Technology team at ONS. All are substantive employees of ONS. The data sent to the LSDT by NHS Digital is processed and stored in this environment. The master version of the LS database is held here. It is this part of the LS infrastructure that ONS plans to move from Crown Hosting Data Centres (CHDC) servers to cloud-based infrastructure provided by Amazon Web Services (AWS). CHDC and AWS are included as Data Processors in this Agreement, and within the processing and storage location section. Security assurance documentation for CHDC and AWS has been supplied to NHS Digital and approved by the NHS Digital Security Team. Environment 2 is the Secure Research Service (SRS). The SRS gives accredited researchers secure access to pseudonymised, unpublished data in order to work on research projects for the public good. The SRS has been accredited as a Digital Economy Act (DEA) 2017 processor by the UK Statistics Authority for the preparation and provision of data for research purposes. The SRS runs on cloud-based infrastructure provided by UKCloud. UKCloud is included within the data processor, processing Location and storage location sections of this Agreement. Security assurance documentation for UKCloud has been supplied to NHS Digital and approved by the NHS Digital Security Team. All implementation and maintenance services related to the SRS’s use of UKCloud infrastructure are provided by Equiniti. Equiniti is included in the within the data processor, processing Location and storage location sections of this Agreement. From May 2022, ONS intends to move the processing of Longitudinal Study (LS) data from servers provided by Crown Hosting Data Centres Ltd. to a cloud-based infrastructure provided by Amazon Web Services (AWS).

Expected output

[5 paragraphs unchanged] A list of research areas in which the LS has been used can be accessed online. To date there have been in excess of 600 LS publications. See: https://www.ucl.ac.uk/epidemiology-health-care/research/epidemiology-public-health/research/celsius/research/columns/research-projects-theme Recent examples of published LS research include: i) Association of childhood out-of-home care status with all-cause mortality up to 42 years later by Murray, Lacey, Maughan and Sacker published in BMC Public Health bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-020-08867-3 ii) (Un-)healthy ageing in local areas: England and Wales 2001 to 2011 by Norman, Murray, Shelton and Head presented at the 2021 conference of the British Society for Population Studies www.researchgate.net/publication/354601659_PN-HOPE-BSPS-Sep-2021?channel=doi&linkId=6141e9bc2db97e68051c00e2&showFulltext=true iii) Associations between commute mode and cardiovascular disease, cancer, and all-cause mortality, and cancer incidence, using linked Census data over 25 years in England and Wales: a cohort study by Patterson, Panter, Vamos, Cummins, Millett and Laverty published in The Lancet Planetary Health www.thelancet.com/journals/lanplh/article/PIIS2542-5196(20)30079-6/fulltext A list of research areas in which the LS has been used can be accessed online. To date there have been in excess of 600 LS publications. See: https://www.ucl.ac.uk/epidemiology-health-care/research/epidemiology-and-public-health/research/celsius/research [2 paragraphs unchanged]

Expected measurable benefits

[1 paragraph unchanged] Recent examples of published LS research include: i) Association of childhood out-of-home care status with all-cause mortality up to 42 years later by Murray, Lacey, Maughan and Sacker published in BMC Public Health bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-020-08867-3 ii) (Un-)healthy ageing in local areas: England and Wales 2001 to 2011 by Norman, Murray, Shelton and Head presented at the 2021 conference of the British Society for Population Studies www.researchgate.net/publication/354601659_PN-HOPE-BSPS-Sep-2021?channel=doi&linkId=6141e9bc2db97e68051c00e2&showFulltext=true iii) Associations between commute mode and cardiovascular disease, cancer, and all-cause mortality, and cancer incidence, using linked Census data over 25 years in England and Wales: a cohort study by Patterson, Panter, Vamos, Cummins, Millett and Laverty published in The Lancet Planetary Health www.thelancet.com/journals/lanplh/article/PIIS2542-5196(20)30079-6/fulltext [5 paragraphs unchanged]

Changed only in punctuation, spacing or capitalisation: Benefits reported.

Objective for processing

Purpose 1 – maintenance of the LS Research Database

The LS Research Database contains pseudonymised patient level data with unique LS Member IDs being used in place of identifying data. NHS Digital holds the master index and has the ability to link LS Member IDs to identifiable data. NHS Digital supports the LS by providing data – some of which are integrated into the LS Research Database and some of which are used to quality assure the LS dataset and resolve anomalies.

Purpose 2 – providing access to the LS Research Database

Researchers need to make an application to access the LS for research purposes. A user support service is available to help researchers. This includes:

• advice on sample sizes and the suitability of the LS for particular projects

• advice on data content and linkage issues

• helping applicants through the application procedure

• identifying the variables and the study population to be included in an extract

• making data extracts

• transforming data and producing the tables or files necessary for analysis

• advising on clearance procedures and confidentiality rules

The LS Research Database is made available for use by researchers under strictly controlled conditions. The controls in place are:

i) All LS project applications both from internal researchers and those applying for sub-license use of the data need to be approved by the Research Accreditation Panel (RAP).

i. Is there public benefit?

ii. Is there demonstrable analytical merit?

iii. Is the project feasible?

iv. Are any relevant privacy implications sufficiently mitigated?

v. Has the project successfully completed a formal ethical review?

The RAP consists of independent members, representatives from government departments, and representatives from the devolved administrations.

iii) The data can only be accessed through ONS’s Secure Research Service (SRS). SRS users have no means to import or export data, or to print or copy and paste the data they are using.

v) In order to work with the data in the SRS, a researcher must be accredited as an Accredited Researcher.

Any transgression by a researcher with regards to these data may lead to prosecution under the Statistics & Registration Service Act 2007 and could lead to a two-year prison sentence.

Purpose 3 - adding 2021 Census data to the LS

ONS conducts a census in England and Wales every ten years and aims to link census data from LS members into the LS Research Database. NHS Digital provides the tracing/matching service, under contract, that enables census data to be linked to the other data held in the LS.

The output from this processing by NHS Digital also makes a vital contribution to quality assuring statistical processes and outputs from the 2021 Census. In summary:

i. Cases where LS members flagged at NHS Digital are not matched to a 2021 Census response provides information on possible non-response to the census (census undercount).

ii. Cases where more than one census response is matched to the same LS member by NHS Digital provides information on possible multiple census responses for the same person (census overcount).

iii. ONS also plans to send data from the Census Coverage Survey (CCS) for tracing by NHS Digital. CCS records are matched against 2021 Census records by ONS as one of the statistical processes in the creation of census outputs. The results of NHS Digital tracing an LS sample of CCS records will provide ONS with an independent source of data to help evaluate the matching operation at ONS.

LS data, including data originating from NHS Digital, are held and processed in two separate environments at ONS.

Environment 1 is a dedicated part of ONS’s corporate infrastructure that can only be accessed by members of the LS Development Team (LSDT) and technical support staff from the Digital Services & Technology team at ONS. All are substantive employees of ONS. The data sent to the LSDT by NHS Digital is processed and stored in this environment. It is this part of the LS infrastructure that ONS plans to move from Crown Hosting Data Centres (CHDC) servers to cloud-based infrastructure provided by Amazon Web Services (AWS). CHDC and AWS are included as Data Processors in this Agreement, and within the processing and storage location section. Security assurance documentation for CHDC and AWS has been supplied to NHS Digital and approved by the NHS Digital Security Team.

Expected output

ONS Outputs:

Purpose 1 – maintenance of the LS Research Database

The output is the maintenance of the LS Research Database. The LS Development Team operates an annual processing cycle resulting in a new version of the LS Research Database being released each year.

Purpose 2 – providing access to the LS Research Database for research

Recent examples of published LS research include:

i) Association of childhood out-of-home care status with all-cause mortality up to 42 years later by Murray, Lacey, Maughan and Sacker published in BMC Public Health

bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-020-08867-3

ii) (Un-)healthy ageing in local areas: England and Wales 2001 to 2011 by Norman, Murray, Shelton and Head presented at the 2021 conference of the British Society for Population Studies

www.researchgate.net/publication/354601659_PN-HOPE-BSPS-Sep-2021?channel=doi&linkId=6141e9bc2db97e68051c00e2&showFulltext=true

www.thelancet.com/journals/lanplh/article/PIIS2542-5196(20)30079-6/fulltext

Purpose 3 - adding 2021 Census data to the LS

Benefits reported