English Longitudinal Study of Ageing (ELSA)

National Centre for Social Research · Research

Expired The latest version ended on 3 April 2025. The September 2026 register still lists the agreement, but its term has passed.

Reference: DARS-NIC-311182-N0L1Y
Latest version: v9.2
Term of latest version: 4 April 2024 to 3 April 2025
Start date: Before 22 February 2019
Data controller: Sole Data Controller
Commercial purposes: No
Sublicensing: No
Files released to date: 0

Why the data was released

Objective for processing

The English Longitudinal Study of Ageing (ELSA) is a well-established, on-going, multi-disciplinary cohort study involving a collaboration between University College London (UCL), the Institute for Fiscal Studies (IFS), the University of Manchester (UoM), and National Centre for Social Research (NatCen). Since its inception in 2002 it has provided valuable insights into a range of social, health and economic issues.

Traditionally, data have been collected biennially face-to-face via interview and clinical examination. While this approach has been very useful and will continue, linkage of study members in ELSA to routinely-collected data offers not only additional rich, complementary information about their health which cannot be gathered using these methods (e.g., valid data on diagnosis and prognosis of common chronic diseases such as cancer and depression) but, crucially, data which come at no burden to the study members. Participants are invited to re-consent every 2 years (these are known as Waves), with Wave 9 completed in July 2019. A file containing eligible cases for the ELSA-HES linkage was uploaded to the UKLLC environment in August 2021. In total, 6942 cases were eligible for the linkage.

WAVE SUMMARY:

The questionnaire content for each wave can be found in the corresponding wave report on the ELSA website: https://www.elsa-project.ac.uk/wave-reports

- Wave 7 included questions on hearing, oral health, extended questions on cognitive function and new questions on expectations and perceptions of the costs of social care.

Wave 8 included measures of risk preferences in the financial and health domains, additional questions around generativity, such as being a grandparent, and the desire to influence younger generations and leave a legacy, perceptions about body weight and whether respondents are trying to lose weight and questions about participants’ sense of taste and smell.

Wave 9 included an online dietary assessment, assessments of food insecurity, expectations of retirement and working beyond age 70, details of care received at home and citizenship. The questionnaire content for each wave can be found in the corresponding wave report on the ELSA website: https://www.elsa-project.ac.uk/wave-reports

Wave 10 fieldwork has commenced, but this wave is not relevant to the current application as data collection is ongoing

Under previous iterations of this Agreement, NHS England (formerly NHS Digital) supplied NatCen Social Research (NatCen) with linked Hospital Episode Statistics (Admitted Patient Care, Outpatient, Critical Care and Accident & Emergency) and Cancer registration data as part of their research obligations as part of the ELSA research group. This agreement permits NatCen to retain this data and to share pseudonymised linked HES and Cancers to IFS and UCL in order for both organisations to carry out their obligations as part of the ELSA research group. The sharing of data will only take place via separate active agreements NHS England (formerly NHS Digital) holds with IFS (NIC-32854-Y8P8B) and UCL (NIC-30493-Y0C0K) where sharing will be restricted to the datasets, years, fields and pseudonymised as specified in those agreements and in this agreement.

NatCen collects permission from respondents for data linkage to Hospital Episode Statistics (HES), Personal Demographics Service (PDS) and Cancer Registrations data on the English Longitudinal Study of Ageing (ELSA). Being able to link survey data to the administrative data is an important feature of the survey, because it allows association between the health and lifestyle information and measurements collected in the survey at a particular time with mortality, cancer and HES data over a longer time period.

The purpose of requesting linked data was to provide important information relating to the health of respondents. This included details which would have been too burdensome to ask them to provide in an interview. It also allowed NatCen to understand the health of ELSA respondents who had not been able to continue with the study owing to ill-health. It also facilitated the creation of a rich dataset by linking HES and Cancer Registrations to the survey data for planned onward sharing of outputs with researchers.

Linkage with NHS England (formerly NHS Digital) data is needed for many analyses to investigate the relationship between health conditions and behavioural and social characteristics reported in the survey and subsequent mortality. For instance, the linked data has been used to explore relationships between survey data on social class and raised blood pressure and mortality rates from coronary heart disease; the analyses also took into account demographic characteristics and other risk factors, such as smoking, family history of heart disease and cholesterol levels.

There are 5 forms of usage that the researchers wish to address.

1. The maintenance and development of the ELSA database to be of the most benefit for health and social care

2. Administrative use when issuing the sample to interviewers, to avoid upsetting bereaved individuals by being prepared in advance

3. For calculation of response rates - NatCen need to know who has become ineligible because of death; the type of attrition is also important in understanding the study sample and the interpretations they can draw

4. For sharing the linked survey+administrative data in a pseudonymised format with the ELSA research team from the collaborating organisations and for our own analyses

5. The interview data are deposited with the UK Data Service, a condition of ELSA funding. Linked data will be applied for separately via NHS England

The National Centre for Social Research is the sole Data Controller and Data Processor for this Agreement.

Data is processed under Article 6(1)(f) of GDPR (processing is necessary for the purposes of the legitimate interests pursued by the controller or by a third party except where such interests are overridden by the interests of fundamental rights and freedoms of the data subject which require protection of personal data, in particular where the data subject is a child)

The Legitimate Interests Assessment (LIA) was carried out by NatCen using the ICO template. NatCen concluded that they can rely on legitimate interests for this processing. A summary of the decision justification is provided below:

Purpose Test: Are you pursuing a legitimate interest?

Response: "The requested data will be used for a programme of research on health and ageing in England. This is a long-standing and on-going programme of work which aims to improve understanding of the ageing process, and how the use of health care affects this ageing process and the evolution of health over the lifecycle."

Necessity Test: Is processing necessary for that purpose?

Response: "All the data that we use is relevant to our purpose. We do not process any data that is not relevant. We would be unable to achieve the aims of our research without these data. Indeed, lack of such data has meant that up until now, these important policy questions have been left unanswered."

Balancing Test: Do the individuals’ interests override the legitimate interest?

Response: "There should be no direct impact of processing on respondents in ELSA. There may however be indirect benefits from the findings of our research, which may be used to improve patient care."

Additionally, the study applies article 9(2)(j) of GDPR (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).

Imperial College London, University of Manchester and University of East Anglia are part of the ELSA research group but have not, and will not receive data provided by NHS England (formerly NHS Digital) under NIC-311182.

The study is funded by the National Institute of Ageing.

Processing activities

This Data Sharing Agreement permits the retention and processing of data provided under previous iterations, No data will flow under this version.

The data provided by NHS England (formerly NHS Digital) was linked to the survey data from the English Longitudinal Survey of Ageing (ELSA). The linking process consists of matching the variables provided by NHS England (formerly NHS Digital) to the survey data via unique identifiers, termed ‘serial numbers’, for each participant who has consented to linkage. NatCen creates a new set of serial numbers for the linked data, and maintains a look up file which allows this to be linked to the survey data.

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).

No data will be shared outside of the ELSA research group. Each organisation requesting access to the pseudonymised linked data will be required to hold an active agreement with NHS England. Data sharing Agreements with The Institute for Fiscal Studies and University College London are in place to permit access to the data provided under this Agreement: IFS (NIC-32854-Y8P8B, expires 21/02/2025), and UCL (NIC-30493-Y0C0K expires 21/04/2024)

All persons accessing the data provided under this Agreement are substantive employees of NatCen and have been appropriately trained in data protection and confidentiality.

The Data will only be used for the purposes described in this agreement.

Data flow between NatCen and NHS England (formerly NHS Digital):

• NatCen provide NHS number, DOB, Sex, Name, Address and ELSA member number to NHS England (formerly NHS Digital)

• NHS England (formerly NHS Digital) provides NHS number, latest demographic data, Exits/re-entries to NHS, ONS mortality data and cancer registration data and pseudonymised HES data

Onward sharing

• NatCen onward share the pseudonymised linked survey+ HES/Cancer/ONS data received from NHS England (formerly NHS Digital)with the ELSA Research Team organisations Institute for Fiscal Studies (IFS) and University College London (UCL) in accordance with the separate DSAs with NHS England held by these organisations.

The data received from NHS England (formerly NHS Digital) is converted by NatCen into a pseudonymised format before onward sharing to ELSA research group members by removing identifying data. Date and Birth, Date of Death, Date of Inquest, and Date of Registration will be converted to MM/YYYY format. Cancer registration number will be downgraded to just the first 6 digits.

Only pseudonymised data will be shared to ELSA Research group organisations and each of these organisations may only receive the data with an active NHS England Data Sharing Agreement in place.

Expected output

The primary objective of ELSA is to collect longitudinal data on health, disability, economics, and social participation and networks, from a broad-based sample of the English population aged 50 and older. This includes a unique coverage of biomedical, genetic, performance and psychosocial measures. Participants are approached biennially for the main interview. All waves included an interviewer-administered questionnaire and self-completion form; in waves 2, 4 and 6 there was also a nurse visit for biomedical measures.

ELSA is not only a study of health but encompasses many facets of ageing. The focus of the study is to provide data necessary for an exploration of the unfolding dynamic relationships between health and functioning, social networks and economic position, as people plan for, move into and progress beyond retirement. It therefore has extensive components measuring financial status and social participation as well as health and cognition.

Some of the questions that ELSA hope to address are:

- the nature and timing of retirement and post retirement labour market activity;

- the determinants of economic well-being at older ages;

- cognitive functioning and its impact on decision making among older people;

- disability and the compression of morbidity;

- the evolution of economic, social and health inequalities in an ageing population;

- social participation and social productivity at older ages;

- the impact of good quality health care on future health and well-being.

Please see Section 5d for details about how ELSA data has been used to address these questions.

The ELSA research team publish a comprehensive report analysing each new wave of data that is collected. These are available to download from the study website - http://www.elsa-project.ac.uk/ - which itself hosts a wide range of information about the study and its findings.

ELSA has a publication list, maintained on the website: http://www.elsa-project.ac.uk/publications . This provides a comprehensive listing of outputs which have included findings based on analysis of ELSA. These include journal articles, working papers, book chapters and conference papers/presentations.

Some examples relevant to the provision of health or adult social care or the promotion of health are included below:

• Sexual health and well-being among older men and women in England: findings from the English Longitudinal Study of Ageing, David Lee , James Nazroo , Daryl O'Connor , Margaret Blake and Neil Pendleton , Archives of Sexual Behavior , Epub ahead of print] , January 2015

• Taking up physical activity in later life and healthy ageing: the English longitudinal study of ageing., Mark Hamer , Kim Lavoie and Simon Bacon , British Journal Of Sports Medicine , Vol: 48 (3), pp:239-43 , February 2014

• Limited health literacy is a barrier to colorectal cancer screening in England: Evidence from the English Longitudinal Study of Ageing., Lindsay C. Kobayashi , Jane Wardle and Christian von Wagner , Preventative medicine , November 2013 Journal Articles

• The SES health gradient on both sides of the Atlantic, ELSA Working Paper, James Banks , Michael Marmot , Zoë Oldfield and James Smith , January 2007

• Association between low functional health literacy and mortality in older adults: longitudinal cohort study, Sophie Bostock and Andrew Steptoe , British Medical Journal , doi:10.1136/bmj.e.1602 , March 2012 Journal Articles

The main output from this data request would be the creation of a rich and extremely useful ELSA database to be used as a resource for research analysis. Future outputs would include those described as collaborators (who are applying to NHS England separately) and the planned sub licencing agreements to bona fide 3rd party researchers which will be applied for in a future amendment to this agreement.

Expected measurable benefits

ELSA is not only a study of health but it produces a great number of analyses and outputs relevant to or aimed at improving the provision of health or adult social care, or the promotion of health. ELSA plays an important role in providing high quality data from a multidisciplinary perspective that integrates information about the economic, social, psychological, community and health experience of older people in England.

The ELSA survey dataset is also a key output. ELSA survey data can be accessed by bona-fide researchers who register to use with the UK data archive and download data sets to do their own analysis. Selected summary tables are also made available via the study website in Excel format - http://www.elsa-project.ac.uk/data_elsa. There is considerable use of the data in these ways.

ELSA findings are used widely by those involved in the development of health and social care policy. As a result, questionnaire and related study content (such as the particular objective measurements used) are adjusted at each wave in response to policy concerns and to emerging social and health issues. For example, wave 7 included questions on hearing, oral health, extended questions on cognitive function and new questions on expectations and perceptions of the costs of social care. Wave 8 included measures of risk preferences in the financial and health domains, additional questions around generativity, such as being a grandparent, and the desire to influence younger generations and leave a legacy, perceptions about body weight and whether respondents are trying to lose weight and questions about participants’ sense of taste and smell. Wave 9 included an online dietary assessment, assessments of food insecurity, expectations of retirement and working beyond age 70, details of care received at home and citizenship. The questionnaire content for each wave can be found in the corresponding wave report on the ELSA website: https://www.elsa-project.ac.uk/wave-reports

Selected examples of the benefits to improving the provision of health or adult social care, or the promotion of health which ELSA data can or has provided are included below:

• Consequences of improved survival with serious illness and the rise in chronic disease. The longitudinal nature of ELSA makes it possible to monitor the experience of people as they acquire chronic illnesses, and evaluate the consequences of ill-health from economic, social and well-being perspectives. New measures of cognitive function included at waves 7 and 8 will allow researchers to estimate the prevalence of mild cognitive impairment and dementia throughout the country, as well as investigate their determinants and consequences for individuals and their families. We can use the detailed data on health, disability and functioning to monitor progress towards achievement of extended healthy life years. This information will also be relevant for government to inform the debate on key issues include the importance of improving care provision for the elderly, managing dementia more effectively through better treatment and research, and deciding how to pay for social care.

• Social care. ELSA provides data permitting an understanding of the impact of changes in the range of social services available to older people on their well-being, health and social integration. Developing this understanding requires the collection of robust data that not only covers all relevant features of the care received, but also covers in detail the characteristics of those receiving, and not receiving, care, and that measures short, medium and long-term outcomes. The multidisciplinary and longitudinal nature of ELSA means that it has great potential in this regard. Data from the survey’s questionnaire module on social care can be used to address questions such as: older people’s receipt of and payment for care; the pattern of take-up of Direct Payments and Personal Budgets by older people; the provision of informal care; and the relationships between receipt of formal care, informal care and care needs among older people.

• Public health and transport policy. ELSA data was used to explore the link between the introduction of a bus pass allowing free local travel during off-peak hours for those aged 60 or over and public health. The findings showed that the policy was associated with increased use of public transport and also that older people who used public transport were less likely to be obese, as were those eligible for free local bus travel. The results were noted by members of the Parliamentary Select Committees for Health and Transport, as well as policymakers at the Department for Transport, for whom they are valuable in future planning of concessionary bus travel policy.

• Organisational changes in the NHS. The health data collected in ELSA, particularly when coupled with linked administrative data on healthcare, will provide important information about the use of services by the elderly before and after the transition from PCT to GP commissioning of care, the quality of health care, the interface between primary and secondary case, and the identification of trends in health that will impact on future demand.

• Social isolation and loneliness. ELSA has provided valuable information about the relationship of social isolation and loneliness to well-being, health and cognition. The survey is an important resource for monitoring these experiences as people age.

• Subjective well-being and public policy. ELSA includes measures of the different elements of subjective well-being since its inception, and these have been supplemented by the core questions from the ONS experimental module. It provides unique information about the trajectories of well-being among older people in England, and relationships with economic position, social factors, health, and cognition.

• Linked data were used in the component of work led by UCL for the report commissioned by the Centre for Ageing Better, ‘Boom and bust?’ published in November 2021, which found that people in their 50s and 60s today face worse circumstances than the cohort before them, with 1 in 5 people in this age group likely to face multiple, long-term problems: https://www.ageing-better.org.uk/sites/default/files/2021-11/boom-and-bust-report-the-last-baby-boomers.pdf. Hospital data were used as a key event and the impact that being admitted to hospital had on mental health, wellbeing and financial circumstances was explored longitudinally (from 2002 to 2018/2019) in ELSA. The resulting report showed that across many key aspects of life such as health, work, housing, finances, family make-up and social lives, people in their 50s and 60s today are facing worse circumstances than people who were at the same age in 2002. These results can be used to inform policies within the health and social care system to reduce the impact of hospitalisations on mental health, well-being and financial situations for future generations. The report also highlighted that people from minority ethnic backgrounds are at particular risk of experiencing an old age marred by multiple, chronic problems such as poor health, poor finances and poor social connections. A documentary was produced to accompany this report: https://www.youtube.com/watch?v=SYYD19b1vPE

• A recent NIHR Alert covering research from ELSA was published as part of a Collection on loneliness, published in September 2021: https://evidence.nihr.ac.uk/collection/how-can-we-reduce-the-toll-of-loneliness-in-older-adults/. This work drew on published analyses that used the linked data to highlight the impact of loneliness on older people’s health and wellbeing and the need for interventions that reduce the toll of loneliness among older people. These findings can contribute to debates, providing empirical evidence to support the health and social care system that interventions and funding are needed to reduce the impact of loneliness among the elderly in the future . A podcast episode was also produced as part of this Collection which the ELSA PI, Andrew Steptoe, took part in: https://open.spotify.com/episode/4WJka6Yt9gl4Xl7CW6qXwD

• Several UCL-led analyses using the linked data were also cited in the WHO scoping review: What is the evidence on the role of the arts in improving health and well-being? (2019) https://www.euro.who.int/en/publications/abstracts/what-is-the-evidence-on-the-role-of-the-arts-in-improving-health-and-well-being-a-scoping-review-2019 . This review led to the establishment of the WHO Collaborating Centre for Arts & Health at UCL in 2021. ELSA linked data is one of the key sources contributing to the evidence base for and monitoring of social prescribing in England.

Imperial College London - have been funded by the Department of Health (DH) to do a 2 year project on the potential health and economic benefits of the free bus pass, and the ELSA-linked data is the central part of this. The linked data will allow the researcher to examine whether there are any differences in hospitalisation/mortality associated with the bus pass, and this information will be the main driver of the economic modelling (and a lot of the policy discussion focuses on costs to benefits). DH are expecting the report in early 2023.

University of East Anglia - The ELSA analysis is part of a larger programme of research which aims to develop an intervention to improve access to primary care for older people and test it within a feasibility study. The ELSA linked with HES analysis is vital because it will map risk factors along the patient pathway from recognising problems, accessing primary care and use of secondary care. The analysis will also be used to test concepts which come out of the interviews and literature review. Results from the ELSA linked with HES analysis will be triangulated with the other components to develop a new intervention to improve access to primary care for deprived older people in rural areas which will in turn should improve community healthcare.

Benefits reported so far

The use of the pre-2018 linked data has allowed the ELSA team to meet the aims of the existing application through the publication of several analyses listed below, many of which have or are expected to influence health or social care policy:

1) The linked data were used in a recent ELSA analysis of trends in dementia between 2002 and 2019 which projected incidence into the future and estimated that around 1.7 million people in England and Wales might have dementia by 2040. This is rather higher than previously estimated. The analysis suggests that dementia incidence might not be declining any longer in England and Wales as it was in the first decade of the century. The researchers warn that if these trends continue, the burden on health and social care will be large, given the growing number of older people. Continued monitoring of the incidence trend using more recent linked data will be important in shaping social care policy. This analysis was featured by several media outlets:

https://news.sky.com/story/1-7m-people-could-be-living-with-dementia-in-england-and-wales-by-2040-says-new-report-12993182

https://inews.co.uk/news/science/obesity-dementia-patients-uk-double-2040-2713009

https://www.thetimes.co.uk/article/dementia-rates-rising-faster-than-thought-due-to-unhealthy-lifestyles-7nq7w5qgm

https://www.telegraph.co.uk/news/2023/10/26/17-million-people-in-england-and-wales-dementia-2040/

2) Analyses using the linked data were included is a report by the Centre for Ageing Better, ‘Boom and bust?’ published in November 2021, which found that people in their 50s and 60s today face worse circumstances than the cohort before them, with 1 in 5 people in this age group likely to face multiple, long-term problems: https://www.ageing-better.org.uk/sites/default/files/2021-11/boom-and-bust-report-thelast-baby-boomers.pdf. The resulting report showed that across many key aspects of life such as health, work, housing, finances, family make-up and social lives, people in their 50s and 60s today are facing worse circumstances than people who were at the same age in 2002. The report also highlighted that people from minority ethnic backgrounds are at particular risk of experiencing an old age marred by multiple, chronic problems such as poor health, poor finances and poor social connections. The evidence presented in this report is of key importance for national and local policy makers and practitioners who are aiming to improve experiences and outcomes for people as they approach later life and in later life. This report also set out a series of recommendations for government. A documentary was produced to accompany this report: https://www.youtube.com/watch?v=SYYD19b1vPE.

3) An NIHR Alert based on analyses using the linked data was published as part of a Collection on loneliness, published in September 2021: https://evidence.nihr.ac.uk/collection/how-can-we-reduce-the-toll-of-loneliness-in-older-adults/. This work drew on published analyses that used the linked data to highlight the impact of loneliness on older people’s health and wellbeing and the need for interventions that reduce the toll of loneliness among older people. A podcast episode was also produced as part of this Collection which the ELSA PI, Andrew Steptoe, took part in: https://open.spotify.com/episode/4WJka6Yt9gl4Xl7CW6qXwD

4) Several UCL-led analyses using the linked data were also cited in the WHO scoping review: What is the evidence on the role of the arts in improving health and well-being? (2019) https://www.euro.who.int/en/publications/abstracts/what-is-the-evidence-on-the-role-of-the-arts-in-improving-health-and-well-being-a-scoping-review-2019. This review led to the establishment of the WHO Collaborating Centre for Arts & Health at UCL in 2021. ELSA linked data is one of the key sources contributing to the evidence base for and monitoring of social prescribing in England. A longitudinal analysis using linked data in ELSA was published in the British Medical Journal in 2019, showing that greater cultural activity was related to reduced mortality over a 14 year follow-up period, independently of socioeconomic factors and initial health status. This article was widely cited, being picked up by more than 70 news outlets, and being the subject of a BMJ Video blog (https://www.bmj.com/content/367/bmj.l6377).

5) The ELSA team produced an analysis of the linked data to examine how the pattern of end-of-life hospital inpatient spending varies across different groups in England. The analysis showed that the pattern of end-of-life spending varies across household composition and socioeconomic status. Quarterly spending increases more sharply for those in couples at the end of life: a 10% reduction in time to death is associated with a 10% rise in individual spending among couples, but only 8% for singles. Spending is also lower in the last 18 months of life for those with no formal qualifications relative to their more educated peers due to lower use of elective care. Differences across groups were not explained by differences in observed morbidity or cause of death, but could be explained by differential access to, or preferences for, care. Given recent trends towards increased cohabitation at older ages and higher educational attainment, these results suggest that policymakers should consider a broader range of sociodemographic attributes when forecasting future health spending and in evaluating inequity in healthcare use: https://ifs.org.uk/publications/variation-end-life-hospital-spending-england-evidence-linked-survey-and-administrative

Datasets on the latest version

Legal basis for provision: Health and Social Care Act 2012 – s261(2)(c)

Datasets approved under DARS-NIC-311182-N0L1Y-v9.2
Dataset	Type of data	Sensitivity	Frequency	Confidential data
Hospital Episode Statistics Accident and Emergency (HES A and E)	Identifiable	Non-Sensitive	One-Off	Consent (Reasonable Expectation)
Hospital Episode Statistics Admitted Patient Care (HES APC)	Identifiable	Non-Sensitive	One-Off	Consent (Reasonable Expectation)
Hospital Episode Statistics Critical Care (HES Critical Care)	Identifiable	Non-Sensitive	One-Off	Consent (Reasonable Expectation)
Hospital Episode Statistics Outpatients (HES OP)	Identifiable	Non-Sensitive	One-Off	Consent (Reasonable Expectation)
MRIS - Cause of Death Report	Identifiable	Sensitive	Ongoing	Consent (Reasonable Expectation)
MRIS - Cohort Event Notification Report	Identifiable	Sensitive	Ongoing	Consent (Reasonable Expectation)
MRIS - Flagging Current Status Report	Identifiable	Sensitive	One-Off	Consent (Reasonable Expectation)
MRIS - Members and Postings Report	Identifiable	Sensitive	One-Off	Consent (Reasonable Expectation)

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.

No files recorded as released under this agreement.

Version history

The register lists each renewal of this agreement as a separate row. This site has 5 versions — earlier versions existed before this site's records begin.

DARS-NIC-311182-N0L1Y-v9.2 4 April 2024 to 3 April 2025

Title: English Longitudinal Study of Ageing (ELSA)
Commercial: No
Sublicensing: No
Datasets: 8
Files released: 0

Datasets: Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Outpatients (HES OP); MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - Members and Postings Report

What changed from DARS-NIC-311182-N0L1Y-v8.3

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

Fields changed from DARS-NIC-311182-N0L1Y-v8.3
Field	Was	Became
Start date	~~2023-12-15~~	2024-04-04
End date	~~2024-03-14~~	2025-04-03

Unchanged: Objective for processing, Processing activities, Expected output, Expected measurable benefits, Benefits reported.

DARS-NIC-311182-N0L1Y-v8.3 15 December 2023 to 14 March 2024

Title: English Longitudinal Study of Ageing (ELSA)
Commercial: No
Sublicensing: No
Datasets: 8
Files released: 0

What changed from DARS-NIC-311182-N0L1Y-v7.2

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

Fields changed from DARS-NIC-311182-N0L1Y-v7.2
Field	Was	Became
Title	~~MR579a - Research on Health and Ageing using English Longitudinal Study of Ageing (ELSA) data linked to NHS Digital data~~	English Longitudinal Study of Ageing (ELSA)
Start date	~~2022-11-24~~	2023-12-15
End date	~~2023-03-23~~	2024-03-14
Hospital Episode Statistics Accident and Emergency (HES A and E): legal basis	~~Health and Social Care Act 2012 – s261(2)(c); Informed Patient consent to permit the receipt, processing and release of data by NHS Digital~~	Health and Social Care Act 2012 – s261(2)(c)
Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis	~~Health and Social Care Act 2012 – s261(2)(c); Informed Patient consent to permit the receipt, processing and release of data by NHS Digital~~	Health and Social Care Act 2012 – s261(2)(c)
Hospital Episode Statistics Critical Care (HES Critical Care): legal basis	~~Health and Social Care Act 2012 – s261(2)(c); Informed Patient consent to permit the receipt, processing and release of data by NHS Digital~~	Health and Social Care Act 2012 – s261(2)(c)
Hospital Episode Statistics Outpatients (HES OP): legal basis	~~Health and Social Care Act 2012 – s261(2)(c); Informed Patient consent to permit the receipt, processing and release of data by NHS Digital~~	Health and Social Care Act 2012 – s261(2)(c)
MRIS - Cause of Death Report: legal basis	~~Health and Social Care Act 2012 – s261(2)(c); Informed Patient consent to permit the receipt, processing and release of data by NHS Digital~~	Health and Social Care Act 2012 – s261(2)(c)
MRIS - Cohort Event Notification Report: legal basis	~~Health and Social Care Act 2012 – s261(2)(c); Informed Patient consent to permit the receipt, processing and release of data by NHS Digital~~	Health and Social Care Act 2012 – s261(2)(c)
MRIS - Flagging Current Status Report: legal basis	~~Health and Social Care Act 2012 – s261(2)(c); Informed Patient consent to permit the receipt, processing and release of data by NHS Digital~~	Health and Social Care Act 2012 – s261(2)(c)
MRIS - Members and Postings Report: legal basis	~~Health and Social Care Act 2012 – s261(2)(c); Informed Patient consent to permit the receipt, processing and release of data by NHS Digital~~	Health and Social Care Act 2012 – s261(2)(c)

Objective for processing

[8 paragraphs unchanged] Under previous iterations of this Agreement, NHS ~~Digital~~ England (formerly NHS Digital) supplied NatCen Social Research (NatCen) with linked Hospital Episode Statistics (Admitted Patient [63 words unchanged] sharing of data will only take place via separate active agreements NHS ~~Digital~~ England (formerly NHS Digital) holds with IFS (NIC-32854-Y8P8B) and UCL (NIC-30493-Y0C0K) where sharing will be restricted to the datasets, years, fields and pseudonymised as specified in those agreements and in this agreement. [2 paragraphs unchanged] Linkage with NHS ~~Digital~~ England (formerly NHS Digital) data is needed for many analyses to investigate the relationship between health [52 words unchanged] factors, such as smoking, family history of heart disease and cholesterol levels. [5 paragraphs unchanged] 5. The interview data are deposited with the UK Data Service, a condition of ELSA funding. Linked data will be applied for separately via NHS ~~Digital~~ England [10 paragraphs unchanged] Imperial College London, University of Manchester and University of East Anglia are [5 words unchanged] group but have not, and will not receive data provided by NHS ~~Digital~~ England (formerly NHS Digital) under NIC-311182. [1 paragraph unchanged]

Processing activities

This Data Sharing Agreement permits the retention and processing of data provided under previous iterations, No data will flow under this ~~version (v7).~~ version. The data provided by NHS ~~Digital~~ England (formerly NHS Digital) was linked to the survey data from the English Longitudinal Survey of Ageing (ELSA). The linking process consists of matching the variables provided by NHS ~~Digital~~ England (formerly NHS Digital) to the survey data via unique identifiers, termed ‘serial numbers’, for each [22 words unchanged] up file which allows this to be linked to the survey data. [1 paragraph unchanged] No data will be shared outside of the ELSA research group. Each [6 words unchanged] linked data will be required to hold an active agreement with NHS ~~Digital.~~ England. Data sharing Agreements with The Institute for Fiscal Studies and University College [11 words unchanged] under this Agreement: IFS (NIC-32854-Y8P8B, expires 21/02/2025), and UCL (NIC-30493-Y0C0K expires 21/04/2024) [2 paragraphs unchanged] Data flow between NatCen and NHS ~~Digital:~~ England (formerly NHS Digital): • NatCen provide NHS number, DOB, Sex, Name, Address and ELSA member number to NHS ~~Digital~~ England (formerly NHS Digital) • NHS ~~Digital~~ England (formerly NHS Digital) provides NHS number, latest demographic data, Exits/re-entries to NHS, ONS mortality data and cancer registration data and pseudonymised HES data [1 paragraph unchanged] • NatCen onward share the pseudonymised linked survey+ HES/Cancer/ONS data received from NHS ~~Digital with~~ England (formerly NHS Digital)with the ELSA Research Team organisations Institute for Fiscal Studies (IFS) and University College London (UCL) in accordance with the separate DSAs with NHS ~~Digital~~ England held by these organisations. The data received from NHS ~~Digital~~ England (formerly NHS Digital) is converted by NatCen into a pseudonymised format before onward sharing to [27 words unchanged] Cancer registration number will be downgraded to just the first 6 digits. Only pseudonymised data will be shared to ELSA Research group organisations and each of these organisations may only receive the data with an active NHS ~~Digital~~ England Data Sharing Agreement in place.

Expected output

[19 paragraphs unchanged] The main output from this data request would be the creation of [17 words unchanged] outputs would include those described as collaborators (who are applying to NHS ~~Digital~~ England separately) and the planned sub licencing agreements to bona fide 3rd party researchers which will be applied for in a future amendment to this agreement.

Expected measurable benefits

[15 paragraphs unchanged] University of East Anglia - The ELSA analysis is part of a [101 words unchanged] older people in rural areas which will in turn should improve community ~~healthcare~~ healthcare.

Benefits reported

The primary objectives are to collect longitudinal data on health, disability, economics, and social participation and networks, from a broad-based sample of the English population aged 50 and older. This includes a unique coverage of biomedical, genetic, performance and psychosocial measures. The use of the pre-2018 linked data has allowed the ELSA team to meet the aims of the existing application through the publication of several analyses listed below, many of which have or are expected to influence health or social care policy: ~~Wave 8 ELSA survey data has been added to the UK data archive and all ELSA datasets continue to be widely used by registered researchers.~~ 1) The linked data were used in a recent ELSA analysis of trends in dementia between 2002 and 2019 which projected incidence into the future and estimated that around 1.7 million people in England and Wales might have dementia by 2040. This is rather higher than previously estimated. The analysis suggests that dementia incidence might not be declining any longer in England and Wales as it was in the first decade of the century. The researchers warn that if these trends continue, the burden on health and social care will be large, given the growing number of older people. Continued monitoring of the incidence trend using more recent linked data will be important in shaping social care policy. This analysis was featured by several media outlets: ~~Some of the questions that ELSA has addressed include:~~ https://news.sky.com/story/1-7m-people-could-be-living-with-dementia-in-england-and-wales-by-2040-says-new-report-12993182 ~~- The nature and timing of retirement and post retirement labour market activity~~ https://inews.co.uk/news/science/obesity-dementia-patients-uk-double-2040-2713009 ~~- The determinants of economic well-being at older ages~~ https://www.thetimes.co.uk/article/dementia-rates-rising-faster-than-thought-due-to-unhealthy-lifestyles-7nq7w5qgm ~~- Cognitive functioning and its impact on decision making among older people~~ https://www.telegraph.co.uk/news/2023/10/26/17-million-people-in-england-and-wales-dementia-2040/ ~~- Disability and the compression of morbidity; the evolution of economic~~ 2) Analyses using the linked data were included is a report by the Centre for Ageing Better, ‘Boom and bust?’ published in November 2021, which found that people in their 50s and 60s today face worse circumstances than the cohort before them, with 1 in 5 people in this age group likely to face multiple, long-term problems: https://www.ageing-better.org.uk/sites/default/files/2021-11/boom-and-bust-report-thelast-baby-boomers.pdf. The resulting report showed that across many key aspects of life such as health, work, housing, finances, family make-up and social lives, people in their 50s and 60s today are facing worse circumstances than people who were at the same age in 2002. The report also highlighted that people from minority ethnic backgrounds are at particular risk of experiencing an old age marred by multiple, chronic problems such as poor health, poor finances and poor social connections. The evidence presented in this report is of key importance for national and local policy makers and practitioners who are aiming to improve experiences and outcomes for people as they approach later life and in later life. This report also set out a series of recommendations for government. A documentary was produced to accompany this report: https://www.youtube.com/watch?v=SYYD19b1vPE. ~~- Social and health inequalities in an ageing population~~ 3) An NIHR Alert based on analyses using the linked data was published as part of a Collection on loneliness, published in September 2021: https://evidence.nihr.ac.uk/collection/how-can-we-reduce-the-toll-of-loneliness-in-older-adults/. This work drew on published analyses that used the linked data to highlight the impact of loneliness on older people’s health and wellbeing and the need for interventions that reduce the toll of loneliness among older people. A podcast episode was also produced as part of this Collection which the ELSA PI, Andrew Steptoe, took part in: https://open.spotify.com/episode/4WJka6Yt9gl4Xl7CW6qXwD ~~- Social participation and social productivity at older ages~~ 4) Several UCL-led analyses using the linked data were also cited in the WHO scoping review: What is the evidence on the role of the arts in improving health and well-being? (2019) https://www.euro.who.int/en/publications/abstracts/what-is-the-evidence-on-the-role-of-the-arts-in-improving-health-and-well-being-a-scoping-review-2019. This review led to the establishment of the WHO Collaborating Centre for Arts & Health at UCL in 2021. ELSA linked data is one of the key sources contributing to the evidence base for and monitoring of social prescribing in England. A longitudinal analysis using linked data in ELSA was published in the British Medical Journal in 2019, showing that greater cultural activity was related to reduced mortality over a 14 year follow-up period, independently of socioeconomic factors and initial health status. This article was widely cited, being picked up by more than 70 news outlets, and being the subject of a BMJ Video blog (https://www.bmj.com/content/367/bmj.l6377). ~~- The impact of good quality health care on future health and well-being.~~ 5) The ELSA team produced an analysis of the linked data to examine how the pattern of end-of-life hospital inpatient spending varies across different groups in England. The analysis showed that the pattern of end-of-life spending varies across household composition and socioeconomic status. Quarterly spending increases more sharply for those in couples at the end of life: a 10% reduction in time to death is associated with a 10% rise in individual spending among couples, but only 8% for singles. Spending is also lower in the last 18 months of life for those with no formal qualifications relative to their more educated peers due to lower use of elective care. Differences across groups were not explained by differences in observed morbidity or cause of death, but could be explained by differential access to, or preferences for, care. Given recent trends towards increased cohabitation at older ages and higher educational attainment, these results suggest that policymakers should consider a broader range of sociodemographic attributes when forecasting future health spending and in evaluating inequity in healthcare use: https://ifs.org.uk/publications/variation-end-life-hospital-spending-england-evidence-linked-survey-and-administrative In addition, linkage with NHS Digital data has yielded benefits. For instance, linked data has been used to explore relationships between survey data on social class and raised blood pressure and mortality rates from coronary heart disease; the analyses also took into account demographic characteristics and other risk factors, such as smoking, family history of heart disease and cholesterol levels. This information is relevant for government and health care providers to inform the debate on population lifestyle and improving health care provision.