MR1a - Health and Development Study - Consented Cohort Members

The Medical Research Council (MRC) National Survey of Health and Development (NSHD) is the oldest and longest running of the British birth cohort studies. From an initial maternity survey of 13,687 (82%) of all births recorded in England, Scotland and Wales during one week of March, 1946, a socially stratified sample of 5,362 singleton babies born to married parents was selected for follow-up. The NSHD study team is housed within the MRC Unit for Lifelong Health and Ageing (LHA) at University College London (UCL).

Over the years, the NSHD’s findings have made an important contribution to society by influencing government policy. Some highlights are given below

The study’s first direct policy impact was a private member’s bill (the ‘Analgesia in Childbirth bill) which was introduced in the House of Commons in 1949. This increased training for midwives to give gas and air analgesia to all mothers during childbirth. It was in response to the maternity survey’s finding that, as only one in five midwives was qualified to administer gas and air, and just 20 per cent of mothers in the survey had received any kind of pain relief during labour.

Other policy investigations that directly used study findings included:

The Platt Committee (The welfare of children in hospital, 1959)

The Plowden Committee (Children and their primary schools, 1967)

The Finer Committee (Report of the committee on one parent families, 1974)

The Acheson Committee (Independent inquiry into inequalities in health, 1998)

The Marmot Review (Fair society, healthy lives, 2010)

The study’s findings have also had an indirect impact on policy by influencing popular thinking. Evidence for this is described in Expected Measurable Benefits to Health and/or Social Care.

Linkages for Scotland and Wales will be performed separately to the NHS Digital linkage. The linkages to central NHS held data will only involve the transfer of data for patients recruited in those nations, so for example there will be no data transferred to NHS Digital for patients recruited in Welsh institutions.

The NSHD study team has collected unique lifetime data on body size and maturation, cognitive and physical function, socioeconomic status and diet; and has repeat adult data on diet, smoking, physical activity, blood pressure and lung function. The most intensive data collection in 2006-2010, when study members were aged 60-64 years, included measurement of cardiac structure and function, body composition and bone density.

The 24th and most recent data collection to the whole sample included a postal questionnaire in 2014 and a home visit by a trained research nurse for interview and assessment in 2015/2016. At the 24th follow-up, the target sample was 2816 study members still living in mainland Britain; this is the maximum sample used in the analyses. Of the remaining 2546 (47%) study members: 957 (18%) had already died, 620 (12%) had previously withdrawn permanently, 574 (11%) lived abroad, and 395 (7%) had remained untraceable for more than 5 years.

Where study members have become lost to follow up, data is being provided under a separate Agreement, NIC-86954-Y0R2N. NSHD will use the data under that Agreement to seek to re-contact those study members and invite them to continue participating in the study, i.e. to re-consent these participants.

The NSHD was the first study (in 1971) to have participants flagged on the NHS Central Register for mortality (ICD codes are used to code cause of death) and cancer registrations. The LHA receives notifications on an ongoing quarterly frequency. UCL wishes to continue to link NSHD study members to cancer, mortality and HES data.

The LHA wishes to link NSHD study members to HES data in order to improve the quality of information on hospital admissions and health outcomes for research purposes. Currently, the study obtains self-reported hospital admission data at each follow-up which are then confirmed through contact with each hospital.

The data from HES will be used to improve the identification of acute events such as those caused by cardiovascular disease (CVD). For example, the unit will assess how life course risk factor trajectories of body size, resting heart rate, blood pressure, socio-economic position (SEP) and health related behaviours, accumulate and interact to influence incidence of CVD, thus potentially identifying possibilities for earlier prevention. As the cohort is entering older age, hospital care becomes increasingly frequent and study members are thus less likely to report hospital admissions over a number of years accurately. It is therefore important to capture this information in other ways. New research within LHA on health service use is being developed which will utilise these data and investigate life course predictors of health care utilisation.

The overall objectives for NSHD have always been to investigate risk and protective factors from across the life course that influence the ageing process. In this application The LHA requests permission to hold previously disseminated datasets and continue to receive the following datasets annually: HES Admitted Patient Care (APC), and HES Outpatients (OP). The LHA requests permission to continue to hold previous disseminated HES (Accident and Emergency) A&E data and additionally request new Emergency Care Dataset (ECDS) data as a replacement for the now discontinued HES A&E dataset. Pseudonymised HES data are required in order that the data may be linked with pseudonymised clinical and questionnaire data. The LHA ask for the minimum of data required to identify adverse events.

The LHA requests permission to hold previously disseminated datasets and continue to receive identifiable Demographics and Civil Registrations-Death data for study administrative purposes on a quarterly basis. The Demographics data being provided under this Agreement will enable NSHD (via NatCen, a contracted nursing agency and listed data processor) to contact study members and invite them to continue participating in the study, providing them with findings on the study uses of data. The Civil Registrations-Death data will ensure study members are correctly identified and removed from future contact - data from the visit will be pseudonymised and stored separately in order to be linked with pseudonymised clinical and questionnaire data.

The LHA will use these data to identify health events which have occurred since the earliest HES data became available, thus enriching and enlarging on existing self-reported data, gathered on an intermittent basis. The frequency of hospital admissions increases with age and the cohort participants were already aged 43 years when HES data were first compiled in 1989. Increasing frequency of admissions with age, often with multiple co-morbidities, renders self -report of diagnoses and timing of events less accurate. HES data will be particularly important not only for acute cardiovascular events such as myocardial infarction and stroke, but also for many chronic conditions, for example heart failure- a major cause of morbidity and mortality in older age, but where self-reported diagnosis is known to be unreliable and where underlying causal mechanisms are poorly understood, but likely to be influenced by factors operating across the life course. HES data will also improve the accuracy of the ongoing NSHD study of life course predictors of health care utilisation in older age. In addition, HES records will be valuable for members of the cohort who no longer actively take part in the study. For these participants who are otherwise lost to morbidity follow-up the team will have records of their major health events since early middle age, thus minimising bias.

The data collected on the NSHD cohort, including that provided by NHS Digital, is used across five research integrated programmes with the overarching aim of identifying social and biological factors that affect lifelong health, ageing and the development of chronic disease risk.

The five inter-related themes are:

1) Physiological resilience

2) Cardiometabolic

3) Mental Ageing

4) Life course methods and functional trajectories

5) Cohort maintenance and data collection

This agreement is for university research, the lawful basis for processing data is GDPR article 6(1)(e): 'Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller'. Also referred to as 'Public Task'. As the research involves health data, which is included in the definition of special categories of personal data, it requires an additional condition for processing. Based on guidance, for health research this is article 9(2)(j), which details that processing is necessary for scientific and research purposes, subject to appropriate safeguards. Research work from NSHD are carried out in the public interest (Article 6(1)(e)) to address important scientific questions surrounding the life course determinants of (healthy) ageing, including the Prime Minister’s challenge on dementia. This research work draws on Article 9(2)(j), where UCLs’ purpose is to conduct statistical scientific research.

For this programme of research, UCL are the sole Data Controller who also process data. Additionally, NatCen Social Research is a data processor but for a limited purpose.

NatCen Social Research (a non-profit social research agency) is involved in the wider project for solely collecting data directly from consented patients through nurse home visits. NSHD will provide NatCen with the contact details of the study member so they will be able to make appointments with them of which includes notification if the participant has died or embarked (in the form of an indicator). NSHD may also send information, previously collected on its participants, for the feed forward section, ensuring past questioning is not duplicated. The data will be encrypted and password protected before being securely transferred. NatCen will collect the data directly from the consented patient using Computer Aided Interview (CAI). These data will have basic cleaning performed before it is sent back securely to the NSHD.

The Unit has a 5-year Medical Research Council core funded programme of research based on the NSHD with the objective to investigate risk and protective factors from across the life course that influence the ageing process. This core funding has been in place since 1962 and is renewed every five years after scientific review. The current funding is active until March 2024.

The data will be used on an ongoing basis to update study member records. The database will be updated after each data release.

The primary output of the linkages with HES, mortality and Cancer Registration data are the maintenance and enhancement of the NSHD-DR. This is in turn used to achieve multiple research outputs that benefit health and social care.

As this is a two part cohort (MR1a and MR1b) the project requires access to both data to be able to understand and make sense of the complete dataset. Although the project has been able to conduct some work on investigating the impact of birth weight on later life cancer, health inequalities and physical activity, it is not yet in a position to publish these data.

Under the five themes a range of research projects or investigations are undertaken by the LHA on an ongoing basis answering different questions or exploring different themes in support of the overarching aim to examine:

• many of the genomic and other epigenomic (genetic material of a cell) and metabolomics (systematic study of the unique chemical fingerprints that specific cellular processes leave behind) factors that influence the risk of many age-related diseases and quantitative traits, often in collaboration with external researchers.

• which factors from across the life course promote good adult cardiovascular function and prevent disease onset, and which increase vulnerability to accelerated cardiovascular ageing.

• which factors from across the life course promote good adult physical capability and musculoskeletal health, and which increase vulnerability to accelerated decline in capability.

• which factors from across the life course promote cognitive capability and protect against depression and which factors increase vulnerability to cognitive decline.

Each of these programmes generate multiple publications in peer review journals annually and findings are further disseminated via conference presentations. A full list of publications produced to date plus details of the current priorities for each programme are published on the MRC LHA website at: http://www.nshd.mrc.ac.uk/.

Publications and conference attendances target an audience of researchers and scientists. Typical conferences attended annually by UCL researchers include Alzheimer’s Association International Conference (AAIC in Summer), CLOSER (various dates through the year) Society for Social Medicine & Population Health (SSM in September), Longitudinal Studies (Wellcome Trust UCL also participate in the annual MRC Festival of Medical Research to disseminate at a lay/population level. Members of the team regularly engage with policy makers and health professionals to influence policy- a recent example is of senior members of the team acting as advisors to the House of Lords Science and Technology Select Committee inquiry into Ageing, Science, Technology and Healthy Living.

The NSHD study website is currently being updated to incorporate a section summarising research findings and their implications for participants and researchers and will also incorporate a current study news section for both participants and researchers (with ongoing updates). High quality research outputs are always needed to inform health and social care policy.

Publications and presentations only use data that is aggregated with small numbers suppressed in line with the HES Analysis Guide/Statistical Disclosure Control Handbook.

This MRC Unit is committed to research on ageing - outputs arising from NHS Digital data will be anonymised in the form of tables, graphs, peer reviewed journals, presentations and books.

These data have been used in a number of publications. A full list of publications can be found at http://www.nshd.mrc.ac.uk/findings/

Results/outcomes will also be disseminated to the cohort members through their annual birthday/newsletter and through the NSHD website (www.nshd.mrc.ac.uk).

Outputs will be produced on a rolling basis.

The research has also enabled insights into how the socioeconomic circumstances in early and adult life affect premature mortality, risks and rates of adult multimorbidity accumulation.

Socioeconomic circumstances in early and adult life show persisting associations with premature mortality from 1971 to 2022, reaffirming the need to address socioeconomic factors across life to reduce inequalities in survival to older age.

Socioeconomically disadvantaged individuals have both earlier onset and more rapid accumulation of multimorbidity resulting in widening inequalities into old age, with independent contributions from both childhood and adulthood socio-economic position.

Longitudinal birth cohort data from the NSHD, together with a range of sensitivity analyses indicate that childhood bradycardia trebles the odds of having AV conduction defects in older age, but it did not influence mortality or older age heart size and function On-going research will examine the impact of genetic risk on COPD and mortality.

The use of the linked dataset (i.e the combination of data previously collected in NSHD and NHS Digital data) has enabled a number of manuscripts to be drafted, presented at conferences and contribute to our understanding of life course ageing.

Below are examples of publications using the NSHD data to benefit public health.

Journal of the American Heart Association.

Title: Childhood Bradycardia Associates With Atrioventricular Conduction Defects in Older Age: A Longitudinal Birth Cohort Study. Constantin-Cristian T, Moon JC, Hardy R, Hughes AD, and Captur G.

Summary: Longitudinal birth cohort data from the NSHD, together with a range of sensitivity analyses indicate that childhood bradycardia trebles the odds of having AV conduction defects in older age, but it did not influence mortality or older age heart size and function On-going research will examine the impact of genetic risk on COPD and mortality

Published:

Journal: The Lancet. Public Health

Title: Age at natural menopause and risk of incident cardiovascular disease: a pooled analysis of individual patient data.

Zhu D, Chung HF, Dobson AJ, Pandeya N, Giles GG, Bruinsma F, Brunner EJ, Kuh D, Hardy R, Avis NE, Gold EB, Derby CA, Matthews KA, Cade JE, Greenwood DC, Demakakos P, Brown DE, Sievert LL, Anderson D, Hayashi K ... Mishra GD.

Summary: The findings from this meta-analysis, including NSHD data, studying associations between age at menopause and the onset and timing of cardiovascular, has important implications for public health. The doubling of cardiovascular disease risk in women below 60 years who have premature menopause indicates an urgent need to raise awareness of cardiovascular disease risk in younger women. Further work is needed to understand the

mechanisms and to redesign primary and secondary prevention guidelines.

Journal: PLoS Med.

Title:Socioeconomic inequalities in prevalence and development of multimorbidity across adulthood: A longitudinal analysis of the MRC 1946 National Survey of Health and Development in the UK.

Khanolkar A, Chaturvedi N, Kuan V, Davis D, Hughes A, Richards M, Bann D, Patalay P.

Summary: This research has investigated how the socioeconomic circumstances in early and adult life affect premature mortality, risks and rates of adult multimorbidity accumulation. Socioeconomically disadvantaged individuals have earlier onset and more rapid accumulation of multimorbidity resulting in widening inequalities into old age, with independent contributions from both childhood and adulthood SEP. This calls for population based interventions in early life and through the life course to reduce the impact of childhood and adulthood inequalities, along with better access and delivery of healthcare for the more vulnerable to help reduce the burden

of multimorbidity.

Journal: J Epidemiol Community Health.

Title: Socioeconomic inequalities across life and premature mortality from 1971 to 2016: findings from three British birth cohorts born in 1946, 1958 and 1970.

Fluharty M, Hardy R, Ploubidis G, Pongiglione B, Bann D.

Summary: Using data from three comparable national British birth cohorts born in 1946, 1958 and 1970 - we investigated changes in inequalities in mortality risk across adulthood and early old age of three generations. The study found that despite declining mortality rates, inequalities in premature mortality appear to have persisted; reaffirming the need to address socioeconomic factors in both early and adult life to reduce inequalities in early-mid adulthood mortality.

The Medical Research Council (MRC) National Survey of Health and Development (NSHD) is the oldest and longest running of the British birth cohort studies. From an initial maternity survey of 13,687 (82%) of all births recorded in England, Scotland and Wales during one week of March, 1946, a socially stratified sample of 5,362 singleton babies born to married parents was selected for follow-up. The NSHD study team is housed within the MRC Unit for Lifelong Health and Ageing (LHA) at University College London (UCL).

Linkages for Scotland and Wales will be performed separately to the NHS Digital linkage. The linkages to central NHS held data will only involve the transfer of data for patients recruited in those nations, so for example there will be no data transferred to NHS Digital for patients recruited in Welsh institutions.

The NSHD study team has collected unique lifetime data on body size and maturation, cognitive and physical function, socioeconomic status and diet; and has repeat adult data on diet, smoking, physical activity, blood pressure and lung function. The most intensive data collection in 2006-2010, when study members were aged 60-64 years, included measurement of cardiac structure and function, body composition and bone density.

The 24th and most recent data collection to the whole sample included a postal questionnaire in 2014 and a home visit by a trained research nurse for interview and assessment in 2015/2016. At the 24th follow-up, the target sample was 2816 study members still living in mainland Britain; this is the maximum sample used in the analyses. Of the remaining 2546 (47%) study members: 957 (18%) had already died, 620 (12%) had previously withdrawn permanently, 574 (11%) lived abroad, and 395 (7%) had remained untraceable for more than 5 years.

Where study members have become lost to follow up, data is being provided under a separate application, NIC-86954-Y0R2N. NSHD will use the data under that application to seek to re-contact those study members and invite them to continue participating in the study, i.e. to re-consent these participants.

The NSHD was the first study (in 1971) to have participants flagged on the NHS Central Register for mortality (ICD codes are used to code cause of death) and cancer registrations. The LHA receives notifications on an ongoing quarterly frequency.

The LHA wishes to link NSHD study members to HES data in order to improve the quality of information on hospital admissions and health outcomes for research purposes. Currently, the study obtains self-reported hospital admission data at each follow-up which are then confirmed through contact with each hospital.

The data from HES will be used to improve the identification of acute events such as those caused by cardiovascular disease (CVD). For example, the unit will assess how life course risk factor trajectories of body size, resting heart rate, blood pressure, socio-economic position (SEP) and health related behaviours, accumulate and interact to influence incidence of CVD, thus potentially identifying possibilities for earlier prevention. As the cohort is entering older age, hospital care becomes increasingly frequent and study members are thus less likely to report hospital admissions over a number of years accurately. It is therefore important to capture this information in other ways. New research within LHA on health service use is being developed which will utilise these data and investigate life course predictors of health care utilisation.

Historic HES data has now been requested in order for NSHD to continue their work on linking NSHD data to HES data, historic data has been requested (Admitted Patient Care: 1997/98 – latest; Outpatients: 2003/4 – latest; A&E: 2007/8 – latest). It had previously been thought that these historic data were too incomplete for research purposes. However, recent work by contemporary cohorts indicate that such data are indeed adequate for purposes such as those originally outlined for the NSHD application for HES data from 2012 onwards, i.e. improving the quality of information of hospital admissions and health outcomes, and identifying acute events. The overall objectives for NSHD have always been to investigate risk and protective factors from across the life course that influence the ageing process and this application for historic HES data is entirely in keeping with this purpose.

There are a number of reasons why the addition of historic HES data will be invaluable to meeting the research objectives. The team will use these data to identify health events which have occurred since the earliest HES data became available, thus enriching and enlarging on existing self-reported data, gathered on an intermittent basis. The frequency of hospital admissions increases with age and the cohort participants were already aged 43 years when HES data were first compiled in 1989. Increasing frequency of admissions with age, often with multiple co-morbidities, renders self–report of diagnoses and timing of events less accurate. ‘Complete’ HES data will be particularly important not only for acute cardiovascular events such as myocardial infarction and stroke, but also for many chronic conditions, for example heart failure- a major cause of morbidity and mortality in older age, but where self-reported diagnosis is known to be unreliable and where underlying causal mechanisms are poorly understand, but likely to be influenced by factors operating across the life course. Complete HES data will also improve the accuracy of the ongoing NSHD study of life course predictors of health care utilisation in older age. In addition, complete HES records will be valuable for members of the cohort who no longer actively take part in the study. For these participants who are otherwise lost to morbidity follow-up the team will have records of their major health events since early middle age, thus minimising bias.

The data collected on the NSHD cohort, including that provided by NHS Digital, is used across five research integrated programmes with the overarching aim of identifying social and biological factors that affect lifelong health, ageing and the development of chronic disease risk.

The five programmes are:

1) Enhancing NSHD

2) Functional Trajectories and Cardiovascular Ageing

3) Physical Capability and Musculoskeletal Ageing

4) Mental Ageing

5) Wellbeing in older age

This agreement is for university research, the lawful basis for processing data is GDPR article 6(1)(e): ‘Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller’. Also referred to as ‘Public Task’. As the research involves health data, which is included in the definition of special categories of personal data, it requires an additional condition for processing. Based on guidance, for health research this is article 9(2)(j), which details that processing is necessary for scientific and research purposes, subject to appropriate safeguards.

For this programme of research, UCL are the sole Data Controller who also process data.

A nursing agency is involved in the wider project for solely collecting data directly from consented patients through home visits. NSHD will provide the nursing agency with the contact details of the study member so they will be able to make appointments with them. NSHD will also send the information needed for the feed forward section. The data will be encrypted and password protected before being securely transferred. The nursing agency will collect the data directly from the consented patient using Computer Aided Interview (CAI). These data will have basic cleaning performed before it is sent back the NSHD. The nursing agency will not have any access to data disseminated by NHS Digital under this agreement.

The Unit has a 5-year Medical Research Council core funded programme of research based on the NSHD with the objective to investigate risk and protective factors from across the life course that influence the ageing process. This core funding has been in place since 1962 and is renewed every five years after scientific review.

The data will be used on an ongoing basis to update study member records. The database will be updated after each data release.

The primary output of the linkages with HES, mortality and Cancer Registration data are the maintenance and enhancement of the NSHD-DR. This is in turn used to achieve multiple research outputs that benefit health and social care.

As this is a two part cohort (MR1a and MR1b) the project requires access to both data to be able to understand and make sense of the complete dataset. Although the project has been able to conduct some work on investigating the impact of birth weight on later life cancer, health inequalities and physical activity, it is not yet in a position to publish these data.

The programme ‘Enhancing NSHD’ examines many of the genomic and other epigenomic (genetic material of a cell) and metabolomics (systematic study of the unique chemical fingerprints that specific cellular processes leave behind) factors that influence the risk of many age-related diseases and quantitative traits, often in collaboration with external researchers.

The programme ‘Functional Trajectories and Cardiovascular Ageing’ examines which factors from across the life course promote good adult cardiovascular function and prevent disease onset, and which increase vulnerability to accelerated cardiovascular ageing.

The programme ‘Physical Capability and Musculoskeletal Ageing’ examines which factors from across the life course promote good adult physical capability and musculoskeletal health, and which increase vulnerability to accelerated decline in capability.

The programme ‘Mental Ageing’ examines which factors from across the life course promote cognitive capability and protect against depression and which factors increase vulnerability to cognitive decline.

The programme ‘Wellbeing in older age’ examines what social contexts and experiences in childhood and early adulthood promote wellbeing in later life and whether wellbeing protects against functional ageing.

Each of these programmes generate multiple publications in peer review journals annually and findings are further disseminated via conference presentations. A full list of publications produced to date plus details of the current priorities for each programme are published on the MRC LHA website at: http://www.nshd.mrc.ac.uk/.

Publications and presentations only use data that is aggregated with small numbers suppressed in line with the HES Analysis Guide.

This MRC Unit is committed to research on ageing – outputs arising from ONS data will be anonymised in the form of tables, graphs, peer reviewed journals, presentations and books.

These data have been used in a number of publications. A full list of publications can be found at http://www.nshd.mrc.ac.uk/findings/

Although the data is currently being analysed, the researchers are not yet in a position to publish the data.

The Medical Research Council (MRC) National Survey of Health and Development (NSHD) is the oldest and longest running of the British birth cohort studies. From an initial maternity survey of 13,687 (82%) of all births recorded in England, Scotland and Wales during one week of March, 1946, a socially stratified sample of 5,362 singleton babies born to married parents was selected for follow-up. The NSHD study team is housed within the MRC Unit for Lifelong Health and Ageing (LHA) at University College London (UCL).

Linkages for Scotland and Wales will be performed separately to the NHS Digital linkage. The linkages to central NHS held data will only involve the transfer of data for patients recruited in those nations, so for example there will be no data transferred to NHS Digital for patients recruited in Welsh institutions.

The NSHD study team has collected unique lifetime data on body size and maturation, cognitive and physical function, socioeconomic status and diet; and has repeat adult data on diet, smoking, physical activity, blood pressure and lung function. The most intensive data collection in 2006-2010, when study members were aged 60-64 years, included measurement of cardiac structure and function, body composition and bone density.

The 24th and most recent data collection to the whole sample included a postal questionnaire in 2014 and a home visit by a trained research nurse for interview and assessment in 2015/2016. At the 24th follow-up, the target sample was 2816 study members still living in mainland Britain; this is the maximum sample used in the analyses. Of the remaining 2546 (47%) study members: 957 (18%) had already died, 620 (12%) had previously withdrawn permanently, 574 (11%) lived abroad, and 395 (7%) had remained untraceable for more than 5 years.

Where study members have become lost to follow up, data is being provided under a separate application, NIC-86954-Y0R2N. NSHD will use the data under that application to seek to re-contact those study members and invite them to continue participating in the study, i.e. to re-consent these participants.

The NSHD was the first study (in 1971) to have participants flagged on the NHS Central Register for mortality (ICD codes are used to code cause of death) and cancer registrations. The LHA receives notifications on an ongoing quarterly frequency.

The LHA wishes to link NSHD study members to HES data in order to improve the quality of information on hospital admissions and health outcomes for research purposes. Currently, the study obtains self-reported hospital admission data at each follow-up which are then confirmed through contact with each hospital.

The data from HES will be used to improve the identification of acute events such as those caused by cardiovascular disease (CVD). For example, the unit will assess how life course risk factor trajectories of body size, resting heart rate, blood pressure, socio-economic position (SEP) and health related behaviours, accumulate and interact to influence incidence of CVD, thus potentially identifying possibilities for earlier prevention. As the cohort is entering older age, hospital care becomes increasingly frequent and study members are thus less likely to report hospital admissions over a number of years accurately. It is therefore important to capture this information in other ways. New research within LHA on health service use is being developed which will utilise these data and investigate life course predictors of health care utilisation.

Historic HES data has now been requested in order for NSHD to continue their work on linking NSHD data to HES data, historic data has been requested (Admitted Patient Care: 1997/98 – latest; Outpatients: 2003/4 – latest; A&E: 2007/8 – latest). It had previously been thought that these historic data were too incomplete for research purposes. However, recent work by contemporary cohorts indicate that such data are indeed adequate for purposes such as those originally outlined for the NSHD application for HES data from 2012 onwards, i.e. improving the quality of information of hospital admissions and health outcomes, and identifying acute events. The overall objectives for NSHD have always been to investigate risk and protective factors from across the life course that influence the ageing process and this application for historic HES data is entirely in keeping with this purpose.

There are a number of reasons why the addition of historic HES data will be invaluable to meeting the research objectives. The team will use these data to identify health events which have occurred since the earliest HES data became available, thus enriching and enlarging on existing self-reported data, gathered on an intermittent basis. The frequency of hospital admissions increases with age and the cohort participants were already aged 43 years when HES data were first compiled in 1989. Increasing frequency of admissions with age, often with multiple co-morbidities, renders self–report of diagnoses and timing of events less accurate. ‘Complete’ HES data will be particularly important not only for acute cardiovascular events such as myocardial infarction and stroke, but also for many chronic conditions, for example heart failure- a major cause of morbidity and mortality in older age, but where self-reported diagnosis is known to be unreliable and where underlying causal mechanisms are poorly understand, but likely to be influenced by factors operating across the life course. Complete HES data will also improve the accuracy of the ongoing NSHD study of life course predictors of health care utilisation in older age. In addition, complete HES records will be valuable for members of the cohort who no longer actively take part in the study. For these participants who are otherwise lost to morbidity follow-up the team will have records of their major health events since early middle age, thus minimising bias.

The data collected on the NSHD cohort, including that provided by NHS Digital, is used across five research integrated programmes with the overarching aim of identifying social and biological factors that affect lifelong health, ageing and the development of chronic disease risk.

The five programmes are:

1) Enhancing NSHD

2) Functional Trajectories and Cardiovascular Ageing

3) Physical Capability and Musculoskeletal Ageing

4) Mental Ageing

5) Wellbeing in older age

This agreement is for university research, the lawful basis for processing data is GDPR article 6(1)(e): ‘Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller’. Also referred to as ‘Public Task’. As the research involves health data, which is included in the definition of special categories of personal data, it requires an additional condition for processing. Based on guidance, for health research this is article 9(2)(j), which details that processing is necessary for scientific and research purposes, subject to appropriate safeguards.

For this programme of research, UCL are the sole Data Controller who also process data.

A nursing agency is involved in the wider project for solely collecting data directly from consented patients through home visits. NSHD will provide the nursing agency with the contact details of the study member so they will be able to make appointments with them. NSHD will also send the information needed for the feed forward section. The data will be encrypted and password protected before being securely transferred. The nursing agency will collect the data directly from the consented patient using Computer Aided Interview (CAI). These data will have basic cleaning performed before it is sent back the NSHD. The nursing agency will not have any access to data disseminated by NHS Digital under this agreement.

The Unit has a 5-year Medical Research Council core funded programme of research based on the NSHD with the objective to investigate risk and protective factors from across the life course that influence the ageing process. This core funding has been in place since 1962 and is renewed every five years after scientific review.

The data will be used on an ongoing basis to update study member records. The database will be updated after each data release.

The primary output of the linkages with HES, mortality and Cancer Registration data are the maintenance and enhancement of the NSHD-DR. This is in turn used to achieve multiple research outputs that benefit health and social care.

As this is a two part cohort (MR1a and MR1b) the project requires access to both data to be able to understand and make sense of the complete dataset. Although the project has been able to conduct some work on investigating the impact of birth weight on later life cancer, health inequalities and physical activity, it is not yet in a position to publish these data.

The programme ‘Enhancing NSHD’ examines many of the genomic and other epigenomic (genetic material of a cell) and metabolomics (systematic study of the unique chemical fingerprints that specific cellular processes leave behind) factors that influence the risk of many age-related diseases and quantitative traits, often in collaboration with external researchers.

The programme ‘Functional Trajectories and Cardiovascular Ageing’ examines which factors from across the life course promote good adult cardiovascular function and prevent disease onset, and which increase vulnerability to accelerated cardiovascular ageing.

The programme ‘Physical Capability and Musculoskeletal Ageing’ examines which factors from across the life course promote good adult physical capability and musculoskeletal health, and which increase vulnerability to accelerated decline in capability.

The programme ‘Mental Ageing’ examines which factors from across the life course promote cognitive capability and protect against depression and which factors increase vulnerability to cognitive decline.

The programme ‘Wellbeing in older age’ examines what social contexts and experiences in childhood and early adulthood promote wellbeing in later life and whether wellbeing protects against functional ageing.

Each of these programmes generate multiple publications in peer review journals annually and findings are further disseminated via conference presentations. A full list of publications produced to date plus details of the current priorities for each programme are published on the MRC LHA website at: http://www.nshd.mrc.ac.uk/.

Publications and presentations only use data that is aggregated with small numbers suppressed in line with the HES Analysis Guide.

This MRC Unit is committed to research on ageing – outputs arising from ONS data will be anonymised in the form of tables, graphs, peer reviewed journals, presentations and books.

These data have been used in a number of publications. A full list of publications can be found at http://www.nshd.mrc.ac.uk/findings/

Although the data is currently being analysed, the researchers are not yet in a position to publish the data.

The Medical Research Council (MRC) National Survey of Health and Development (NSHD) is the oldest and longest running of the British birth cohort studies. From an initial maternity survey of 13,687 (82%) of all births recorded in England, Scotland and Wales during one week of March, 1946, a socially stratified sample of 5,362 singleton babies born to married parents was selected for follow-up. The NSHD study team is housed within the MRC Unit for Lifelong Health and Ageing (LHA) at University College London (UCL).

Linkages for Scotland and Wales will be performed separately to the NHS Digital linkage. The linkages to central NHS held data will only involve the transfer of data for patients recruited in those nations, so for example there will be no data transferred to NHS Digital for patients recruited in Welsh institutions.

The NSHD study team has collected unique lifetime data on body size and maturation, cognitive and physical function, socioeconomic status and diet; and has repeat adult data on diet, smoking, physical activity, blood pressure and lung function. The most intensive data collection in 2006-2010, when study members were aged 60-64 years, included measurement of cardiac structure and function, body composition and bone density.

The 24th and most recent data collection to the whole sample included a postal questionnaire in 2014 and a home visit by a trained research nurse for interview and assessment in 2015/2016. At the 24th follow-up, the target sample was 2816 study members still living in mainland Britain; this is the maximum sample used in the analyses. Of the remaining 2546 (47%) study members: 957 (18%) had already died, 620 (12%) had previously withdrawn permanently, 574 (11%) lived abroad, and 395 (7%) had remained untraceable for more than 5 years.

Where study members have become lost to follow up, data is being provided under a separate application, NIC-86954-Y0R2N. NSHD will use the data under that application to seek to re-contact those study members and invite them to continue participating in the study, i.e. to re-consent these participants.

The NSHD was the first study (in 1971) to have participants flagged on the NHS Central Register for mortality (ICD codes are used to code cause of death) and cancer registrations. The LHA receives notifications on an ongoing quarterly frequency.

The LHA wishes to link NSHD study members to HES data in order to improve the quality of information on hospital admissions and health outcomes for research purposes. Currently, the study obtains self-reported hospital admission data at each follow-up which are then confirmed through contact with each hospital.

The data from HES will be used to improve the identification of acute events such as those caused by cardiovascular disease (CVD). For example, the unit will assess how life course risk factor trajectories of body size, resting heart rate, blood pressure, socio-economic position (SEP) and health related behaviours, accumulate and interact to influence incidence of CVD, thus potentially identifying possibilities for earlier prevention. As the cohort is entering older age, hospital care becomes increasingly frequent and study members are thus less likely to report hospital admissions over a number of years accurately. It is therefore important to capture this information in other ways. New research within LHA on health service use is being developed which will utilise these data and investigate life course predictors of health care utilisation.

Historic HES data has now been requested in order for NSHD to continue their work on linking NSHD data to HES data, historic data has been requested (Admitted Patient Care: 1997/98 – latest; Outpatients: 2003/4 – latest; A&E: 2007/8 – latest). It had previously been thought that these historic data were too incomplete for research purposes. However, recent work by contemporary cohorts indicate that such data are indeed adequate for purposes such as those originally outlined for the NSHD application for HES data from 2012 onwards, i.e. improving the quality of information of hospital admissions and health outcomes, and identifying acute events. The overall objectives for NSHD have always been to investigate risk and protective factors from across the life course that influence the ageing process and this application for historic HES data is entirely in keeping with this purpose.

There are a number of reasons why the addition of historic HES data will be invaluable to meeting the research objectives. The team will use these data to identify health events which have occurred since the earliest HES data became available, thus enriching and enlarging on existing self-reported data, gathered on an intermittent basis. The frequency of hospital admissions increases with age and the cohort participants were already aged 43 years when HES data were first compiled in 1989. Increasing frequency of admissions with age, often with multiple co-morbidities, renders self–report of diagnoses and timing of events less accurate. ‘Complete’ HES data will be particularly important not only for acute cardiovascular events such as myocardial infarction and stroke, but also for many chronic conditions, for example heart failure- a major cause of morbidity and mortality in older age, but where self-reported diagnosis is known to be unreliable and where underlying causal mechanisms are poorly understand, but likely to be influenced by factors operating across the life course. Complete HES data will also improve the accuracy of the ongoing NSHD study of life course predictors of health care utilisation in older age. In addition, complete HES records will be valuable for members of the cohort who no longer actively take part in the study. For these participants who are otherwise lost to morbidity follow-up the team will have records of their major health events since early middle age, thus minimising bias.

The data collected on the NSHD cohort, including that provided by NHS Digital, is used across five research integrated programmes with the overarching aim of identifying social and biological factors that affect lifelong health, ageing and the development of chronic disease risk.

The five programmes are:

1) Enhancing NSHD

2) Functional Trajectories and Cardiovascular Ageing

3) Physical Capability and Musculoskeletal Ageing

4) Mental Ageing

5) Wellbeing in older age

This agreement is for university research, the lawful basis for processing data is GDPR article 6(1)(e): ‘Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller’. Also referred to as ‘Public Task’. As the research involves health data, which is included in the definition of special categories of personal data, it requires an additional condition for processing. Based on guidance, for health research this is article 9(2)(j), which details that processing is necessary for scientific and research purposes, subject to appropriate safeguards.

For this programme of research, UCL are the sole Data Controller who also process data.

A nursing agency is involved in the wider project for solely collecting data directly from consented patients through home visits. NSHD will provide the nursing agency with the contact details of the study member so they will be able to make appointments with them. NSHD will also send the information needed for the feed forward section. The data will be encrypted and password protected before being securely transferred. The nursing agency will collect the data directly from the consented patient using Computer Aided Interview (CAI). These data will have basic cleaning performed before it is sent back the NSHD. The nursing agency will not have any access to data disseminated by NHS Digital under this agreement.

The Unit has a 5-year Medical Research Council core funded programme of research based on the NSHD with the objective to investigate risk and protective factors from across the life course that influence the ageing process. This core funding has been in place since 1962 and is renewed every five years after scientific review.

The data will be used on an ongoing basis to update study member records. The database will be updated after each data release.

The primary output of the linkages with HES, mortality and Cancer Registration data are the maintenance and enhancement of the NSHD-DR. This is in turn used to achieve multiple research outputs that benefit health and social care.

As this is a two part cohort (MR1a and MR1b) the project requires access to both data to be able to understand and make sense of the complete dataset. Although the project has been able to conduct some work on investigating the impact of birth weight on later life cancer, health inequalities and physical activity, it is not yet in a position to publish these data.

The programme ‘Enhancing NSHD’ examines many of the genomic and other epigenomic (genetic material of a cell) and metabolomics (systematic study of the unique chemical fingerprints that specific cellular processes leave behind) factors that influence the risk of many age-related diseases and quantitative traits, often in collaboration with external researchers.

The programme ‘Functional Trajectories and Cardiovascular Ageing’ examines which factors from across the life course promote good adult cardiovascular function and prevent disease onset, and which increase vulnerability to accelerated cardiovascular ageing.

The programme ‘Physical Capability and Musculoskeletal Ageing’ examines which factors from across the life course promote good adult physical capability and musculoskeletal health, and which increase vulnerability to accelerated decline in capability.

The programme ‘Mental Ageing’ examines which factors from across the life course promote cognitive capability and protect against depression and which factors increase vulnerability to cognitive decline.

The programme ‘Wellbeing in older age’ examines what social contexts and experiences in childhood and early adulthood promote wellbeing in later life and whether wellbeing protects against functional ageing.

Each of these programmes generate multiple publications in peer review journals annually and findings are further disseminated via conference presentations. A full list of publications produced to date plus details of the current priorities for each programme are published on the MRC LHA website at: http://www.nshd.mrc.ac.uk/.

Publications and presentations only use data that is aggregated with small numbers suppressed in line with the HES Analysis Guide.

This MRC Unit is committed to research on ageing – outputs arising from ONS data will be anonymised in the form of tables, graphs, peer reviewed journals, presentations and books.

These data have been used in a number of publications. A full list of publications can be found at http://www.nshd.mrc.ac.uk/findings/

Although the data is currently being analysed, the researchers are not yet in a position to publish the data.