ONS Longitudinal Study

The Office for National Statistics (ONS) requires access to NHS England data for the purpose of the ONS Longitudinal Study (LS).

The LS is the largest longitudinal data resource in England and Wales. It contains linked census and life events data for an approximate 1% sample of the population of England and Wales.

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

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

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

ONS produces the LS Research Database which contains pseudonymised patient level data with unique LS Member IDs being used in place of identifying data. The LS Research Database contains some NHS England variables and some information derived from NHS England data. ONS actively promotes wide use of the LS Research Database.

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

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

• advice on data content and linkage issues

• helping applicants through the application procedure

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

• making data extracts

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

• advising on clearance procedures and confidentiality rules

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

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

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

i. Is there public benefit?

ii. Is there demonstrable analytical merit?

iii. Is the project feasible?

iv. Are any relevant privacy implications sufficiently mitigated?

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

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

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

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

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

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

Prior to 2023, NHS England held the master index required to link LS Member IDs to identifiable data. NHS England was the only organisation where a complete permanent record of the names and addresses of all LS members was held. NHS England provided a service to ONS to enable data for the same individual from different sources to be linked and ONS only held the linked data in pseudonymised form with each individual identifiable only by a unique LS Number.

From 2023 onwards, ONS will be responsible for the cohort management function. To do this, ONS will require NHS England (which has replaced NHS Digital) to transfer the legacy cohort data containing NHS Number linked to LS Number.

ONS will initially bring the cohort up to date with the business-as-usual annual processing and ONS will then undertake linkages with Personal Demographics Service (PDS) data to perform the services previously provided by NHS England.

NHS England data is used to maintain the LS Research Database

The following NHS England data will be accessed:

• Demographics – necessary because this is the dataset from which ‘immigrants’ are identified and it provides details of current postings, deaths, embarkations and postcode sector for inclusion in the LS Research Database.

The level of the data will be:

• Identifiable – necessary to link with other datasets

The data will be minimised as follows:

• Limited to a study cohort of all individuals born on one of four dates of birth each year identified from birth, demographics and/or census records.

ONS is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in 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.

The wide range of research conducted using the LS has delivered significant public benefit.

The Economic and Social Research Council funds a support team, the Centre for Longitudinal Study Information and User Support (CeLSIUS), for UK academic, government, statutory and voluntary sector users of the LS.

Crown Hosting Data Centres Ltd and Amazon Web Services provide IT hosting services to ONS and will store the data as contracted by ONS.

Equiniti ICS Ltd provide a managed service for ONS’ Secure Research Service (SRS) using ONS Private Cloud Infrastructure on the UK mainland. Equiniti processors do not have the right to interrogate the data but they do manage the systems that the SRS are comprised of on the ONS private cloud. Data is strictly managed by ONS security cleared staff.

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

i) Members of the CeLSIUS team and

ii) The LS Development Team (LSDT) at ONS

Management/leadership and administrative support of the CeLSIUS team is provided by staff based at University College London (UCL). The User Support Officers (USOs) (i.e. those delivering the support service to users) are also UCL employees. However, they carry out this work as processors on behalf of ONS on ONS platforms using ONS devices and user accounts issued and managed by ONS.

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

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

The LSDT provide an equivalent service for researchers from all other sectors as well as researchers from ONS itself. All members of the LSDT are substantive employees of ONS.

ONS has never undertaken Public and Patient Involvement and Engagement in relation to the LS as a specific source of data but ONS does undertake wider public engagement around the use of microdata more generally for research purposes. The ‘People's attitudes to data’ section of the ONS website reports the findings of this work. Engagement with the public regarding use of their data is an ongoing commitment for ONS and we will continue to publish our findings here:

www.ons.gov.uk/aboutus/usingpublicdatatoproducestatistics/peoplesattitudestodata

The expected outputs of the processing will be:

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

• The provision of access to the LS Research Database leading to individual project research outputs.

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

Recent examples of published LS research include:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

4. Current Research

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

• Understanding the impact of migration on population mortality dynamics and cancer risk – Ayse Arik (Heriot-Watt University)

• Airborne pollution and lifecycle population health - Gabriella Conti (UCL), Edward Pinchbeck (University of Birmingham), Sefi Roth (LSE) and Elisabetta De Cao (LSE)

• Understanding the social determinants of place of death in older adults - Joanna Davies, Katherine Sleeman and Matthew Maddocks (King's College London) and Fliss Murtagh (Hull York Medical School)

• Health and education outcomes of first and second generation migrant children in England and Wales - Pia Hardelid and Kate Lewis (UCL)

• Cancer diagnosis and outcomes amongst Pakistanis and their descendants in England and Wales - Joseph Harrison, Hill Kulu and Frank Sullivan (University of St Andrews)

• Early life and intergenerational transmission of health – Genevieve Jeffrey, Elisabetta De Cao and Alistair Mcguire (LSE)

• Assessing inequalities in health, wellbeing and social participation outcomes for young carers - Rebecca Lacey (UCL) and Lynne Forrest (University of Edinburgh)

• Variations in bowel cancer survival by individual characteristics and area type – Paul Norman and Charlotte Sturley (University of Leeds)

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

• Workplace location deprivation: relationship with health, cancer and mortality - Nicola Shelton (UCL)

The Office for National Statistics (ONS) requires access to NHS England data for the purpose of the ONS Longitudinal Study (LS).

The LS is the largest longitudinal data resource in England and Wales. It contains linked census and life events data for an approximate 1% sample of the population of England and Wales.

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

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

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

ONS produces the LS Research Database which contains pseudonymised patient level data with unique LS Member IDs being used in place of identifying data. The LS Research Database contains some NHS England variables and some information derived from NHS England data. ONS actively promotes wide use of the LS Research Database.

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

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

• advice on data content and linkage issues

• helping applicants through the application procedure

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

• making data extracts

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

• advising on clearance procedures and confidentiality rules

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

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

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

i. Is there public benefit?

ii. Is there demonstrable analytical merit?

iii. Is the project feasible?

iv. Are any relevant privacy implications sufficiently mitigated?

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

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

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

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

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

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

Prior to 2023, NHS Digital held the master index required to link LS Member IDs to identifiable data. NHS Digital was the only organisation where a complete permanent record of the names and addresses of all LS members was held. NHS Digital provided a service to ONS to enable data for the same individual from different sources to be linked and ONS only held the linked data in pseudonymised form with each individual identifiable only by a unique LS Number.

From 2023 onwards, ONS will be responsible for the cohort management function. To do this, ONS will require NHS England (which has replaced NHS Digital) to transfer the legacy cohort data containing NHS Number linked to LS Number.

ONS will initially bring the cohort up to date with the business-as-usual annual processing and ONS will then undertake linkages with Personal Demographics Service (PDS) data to perform the services previously provided by NHS Digital.

NHS England data is used to maintain the LS Research Database

The following NHS England data will be accessed:

• Demographics – necessary because this is the dataset from which ‘immigrants’ are identified and it provides details of current postings, deaths, embarkations and postcode sector for inclusion in the LS Research Database.

The level of the data will be:

• Identifiable – necessary to link with other datasets

The data will be minimised as follows:

• Limited to a study cohort of all individuals born on one of four dates of birth each year identified from birth, demographics and/or census records.

ONS is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in 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.

The wide range of research conducted using the LS has delivered significant public benefit.

The Economic and Social Research Council funds a support team, the Centre for Longitudinal Study Information and User Support (CeLSIUS), for UK academic, government, statutory and voluntary sector users of the LS.

Crown Hosting Data Centres Ltd and Amazon Web Services provide IT hosting services to ONS and will store the data as contracted by ONS.

Equiniti ICS Ltd provide a managed service for ONS’ Secure Research Service (SRS) using ONS Private Cloud Infrastructure on the UK mainland. Equiniti processors do not have the right to interrogate the data but they do manage the systems that the SRS are comprised of on the ONS private cloud. Data is strictly managed by ONS security cleared staff.

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

i) Members of the CeLSIUS team and

ii) The LS Development Team (LSDT) at ONS

Management/leadership and administrative support of the CeLSIUS team is provided by staff based at University College London (UCL). The User Support Officers (USOs) (i.e. those delivering the support service to users) are also UCL employees. However, they carry out this work as processors on behalf of ONS on ONS platforms using ONS devices and user accounts issued and managed by ONS.

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

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

The LSDT provide an equivalent service for researchers from all other sectors as well as researchers from ONS itself. All members of the LSDT are substantive employees of ONS.

ONS has never undertaken Public and Patient Involvement and Engagement in relation to the LS as a specific source of data but ONS does undertake wider public engagement around the use of microdata more generally for research purposes. The ‘People's attitudes to data’ section of the ONS website reports the findings of this work. Engagement with the public regarding use of their data is an ongoing commitment for ONS and we will continue to publish our findings here:

www.ons.gov.uk/aboutus/usingpublicdatatoproducestatistics/peoplesattitudestodata

The expected outputs of the processing will be:

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

• The provision of access to the LS Research Database leading to individual project research outputs.

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

Recent examples of published LS research include:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

4. Current Research

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

• Understanding the impact of migration on population mortality dynamics and cancer risk – Ayse Arik (Heriot-Watt University)

• Airborne pollution and lifecycle population health - Gabriella Conti (UCL), Edward Pinchbeck (University of Birmingham), Sefi Roth (LSE) and Elisabetta De Cao (LSE)

• Understanding the social determinants of place of death in older adults - Joanna Davies, Katherine Sleeman and Matthew Maddocks (King's College London) and Fliss Murtagh (Hull York Medical School)

• Health and education outcomes of first and second generation migrant children in England and Wales - Pia Hardelid and Kate Lewis (UCL)

• Cancer diagnosis and outcomes amongst Pakistanis and their descendants in England and Wales - Joseph Harrison, Hill Kulu and Frank Sullivan (University of St Andrews)

• Early life and intergenerational transmission of health – Genevieve Jeffrey, Elisabetta De Cao and Alistair Mcguire (LSE)

• Assessing inequalities in health, wellbeing and social participation outcomes for young carers - Rebecca Lacey (UCL) and Lynne Forrest (University of Edinburgh)

• Variations in bowel cancer survival by individual characteristics and area type – Paul Norman and Charlotte Sturley (University of Leeds)

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

• Workplace location deprivation: relationship with health, cancer and mortality - Nicola Shelton (UCL)

The Office for National Statistics (ONS) requires access to NHS England data for the purpose of the ONS Longitudinal Study (LS).

The LS is the largest longitudinal data resource in England and Wales. It contains linked census and life events data for an approximate 1% sample of the population of England and Wales.

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

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

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

ONS produces the LS Research Database which contains pseudonymised patient level data with unique LS Member IDs being used in place of identifying data. The LS Research Database contains some NHS England variables and some information derived from NHS England data. ONS actively promotes wide use of the LS Research Database.

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

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

• advice on data content and linkage issues

• helping applicants through the application procedure

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

• making data extracts

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

• advising on clearance procedures and confidentiality rules

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

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

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

i. Is there public benefit?

ii. Is there demonstrable analytical merit?

iii. Is the project feasible?

iv. Are any relevant privacy implications sufficiently mitigated?

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

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

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

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

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

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

Prior to 2023, NHS Digital held the master index required to link LS Member IDs to identifiable data. NHS Digital was the only organisation where a complete permanent record of the names and addresses of all LS members was held. NHS Digital provided a service to ONS to enable data for the same individual from different sources to be linked and ONS only held the linked data in pseudonymised form with each individual identifiable only by a unique LS Number.

From 2023 onwards, ONS will be responsible for the cohort management function. To do this, ONS will require NHS England (which has replaced NHS Digital) to transfer the legacy cohort data containing NHS Number linked to LS Number.

ONS will initially bring the cohort up to date with the business-as-usual annual processing and ONS will then undertake linkages with Personal Demographics Service (PDS) data to perform the services previously provided by NHS Digital.

NHS England data is used to maintain the LS Research Database

The following NHS England data will be accessed:

• Demographics – necessary because this is the dataset from which ‘immigrants’ are identified and it provides details of current postings, deaths, embarkations and postcode sector for inclusion in the LS Research Database.

The level of the data will be:

• Identifiable – necessary to link with other datasets

The data will be minimised as follows:

• Limited to a study cohort of all individuals born on one of four dates of birth each year identified from birth, demographics and/or census records.

ONS is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in 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.

The wide range of research conducted using the LS has delivered significant public benefit.

The Economic and Social Research Council funds a support team, the Centre for Longitudinal Study Information and User Support (CeLSIUS), for UK academic, government, statutory and voluntary sector users of the LS.

Crown Hosting Data Centres Ltd and Amazon Web Services provide IT hosting services to ONS and will store the data as contracted by ONS.

Equiniti ICS Ltd provide a managed service for ONS’ Secure Research Service (SRS) using ONS Private Cloud Infrastructure on the UK mainland. Equiniti processors do not have the right to interrogate the data but they do manage the systems that the SRS are comprised of on the ONS private cloud. Data is strictly managed by ONS security cleared staff.

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

i) Members of the CeLSIUS team and

ii) The LS Development Team (LSDT) at ONS

Management/leadership and administrative support of the CeLSIUS team is provided by staff based at University College London (UCL). The User Support Officers (USOs) (i.e. those delivering the support service to users) are also UCL employees. However, they carry out this work as processors on behalf of ONS on ONS platforms using ONS devices and user accounts issued and managed by ONS.

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

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

The LSDT provide an equivalent service for researchers from all other sectors as well as researchers from ONS itself. All members of the LSDT are substantive employees of ONS.

ONS has never undertaken Public and Patient Involvement and Engagement in relation to the LS as a specific source of data but ONS does undertake wider public engagement around the use of microdata more generally for research purposes.

The expected outputs of the processing will be:

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

• The provision of access to the LS Research Database leading to individual project research outputs.

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

Recent examples of published LS research include:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

4. Current Research

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

• Understanding the impact of migration on population mortality dynamics and cancer risk – Ayse Arik (Heriot-Watt University)

• Airborne pollution and lifecycle population health - Gabriella Conti (UCL), Edward Pinchbeck (University of Birmingham), Sefi Roth (LSE) and Elisabetta De Cao (LSE)

• Understanding the social determinants of place of death in older adults - Joanna Davies, Katherine Sleeman and Matthew Maddocks (King's College London) and Fliss Murtagh (Hull York Medical School)

• Health and education outcomes of first and second generation migrant children in England and Wales - Pia Hardelid and Kate Lewis (UCL)

• Cancer diagnosis and outcomes amongst Pakistanis and their descendants in England and Wales - Joseph Harrison, Hill Kulu and Frank Sullivan (University of St Andrews)

• Early life and intergenerational transmission of health – Genevieve Jeffrey, Elisabetta De Cao and Alistair Mcguire (LSE)

• Assessing inequalities in health, wellbeing and social participation outcomes for young carers - Rebecca Lacey (UCL) and Lynne Forrest (University of Edinburgh)

• Variations in bowel cancer survival by individual characteristics and area type – Paul Norman and Charlotte Sturley (University of Leeds)

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

• Workplace location deprivation: relationship with health, cancer and mortality - Nicola Shelton (UCL)