MR1032 - The NEWCASTLE 85+ STUDY: BIOLOGICAL, CLINICAL & PSYCHOLOGICAL FACTORS ASSOCIATED WITH HEALTHY AGEING
University of Newcastle upon Tyne · Academic
In term In term in the September 2026 edition: the latest version runs to 30 September 2026.
- Reference
- DARS-NIC-148471-FR43L
- Current version
- v4.11
- Term of current version
- 23 October 2023 to 30 September 2026
- Start date
- Before 1 October 2019
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 0
Why the data was released
Objective for processing
Newcastle University requires access to NHS England data for the purpose of the following research project:
The Newcastle 85+ Study: Biological, Clinical & Psychological Factors Associated with Healthy Ageing
The following is a summary of the aims of the research project provided by Newcastle University:
The average age of the population of the United Kingdom is increasing, resulting in challenges as regards health and social care. People aged 85 years and over (the very old) are a growing sector of the UK population and this is predicted to increase considerably; from 1.6 million in 2016 to 3.2 million by 2041. Those aged 85 and older are the fastest growing sector of the population. Some people age well, whereas others experience multiple health and social needs. Identifying why this heterogeneity exists and understanding which transitions from independence to dependence are malleable, is key to maintain wellbeing and reducing the burden on services; longitudinal observation is necessary. It is recognised that older people have complex health and social care needs as a consequence of increasing prevalence of disease and illness, often with a profound impact on everyday life. However, at the turn of the millennium few studies had investigated the health of this age group. The Newcastle 85+ study is a prospective observational longitudinal population cohort study. The study, based in the North-East of England was therefore established with the following aims:
(i) To determine the full spectrum of health within an inception cohort of 85-year-olds, irrespective of health status, and establish the distribution and variability of a broad range of health measures within this age group.
(ii) To examine in unprecedented detail, the health trajectories and outcomes as the cohort aged and the associations with underlying biological, medical and social factors.
Specific research questions include:
(i) Confirming trajectories of disability and estimating years spent with disability and frailty between age 85 and 97, with the aim to identify potentially modifiable risk factors;
(ii) Identifying predictors of “healthy” ageing to age 97;
(iii) Establishing how the demand on health and social care resources change between the ninth and tenth decade, particularly regarding informal care and profiling current health and social care use (including informal unpaid care, to inform policy makers on how to optimally manage this age group;
(iv) Determining late life factors influencing frailty, in particular cognition; and,
(v) Exploring the levels of participation and loneliness and its link to health and social care usage.
The Newcastle 85+ study is one of the largest cohorts of the "very old" in the United Kingdom and has completed 10th year of follow-up. The detailed information over a 10-year period regarding health and social care issues together with the mortality data allows study to identify what factors are associated with healthy ageing in this very old age group, particularly using the mortality data in conjunction with other outcomes e.g., disability, frailty. Very few studies have information on people of this age, and the mortality data is important for future analyses.
Recruitment into the study commenced in 2006. Four follow up phases have followed baseline data collection at 18 months (phase 2), 3 years (phase 3), 5 years (phase 4) and 10 years (phase 5). Three methods of data collection were utilised: (i) a multidimensional health assessment - MDHA (questionnaires, measurement and function tests, blood tests), (ii) General Practice record review (GPRR) and (iii) mortality data obtained through NHS England. The MDHA was undertaken in all phases and was identical in phases 1 to 3 and reduced in phases 4 and 5 due to the ageing study population. An identical GPRR took place at baseline and phases 3, 4 and 5, and mortality data was received from NHS England 3-monthly throughout the study.
Data are currently being used for analyses in the Older People and Frailty NIHR Policy Research Unit at Newcastle University to look at the size of interventions needed to narrow the gap in DFLE between rich and poor, with a focus on the key long-term conditions and common comorbidities that contribute most to DFLE. This was at request from the Department from Health and Social Care.
The following NHS England data will be accessed:
> Mortality – necessary because mortality data will enable Newcastle University to undertake survival analysis since there are very few participants now surviving. This data will help identify risk of mortality for specific risk factors, identify new conditions not previously identified in GP record review, and to accurately calculate population at risk for incidence.
> Demographics – necessary to establish whether a participant was relocated to a care home and subsequently passed away at that location. This provides invaluable context, enriching Newcastle University’s understanding of environmental and locational factors influencing end-of-life care and outcomes.
The level of the data will be:
> Identifiable – necessary to ensure accurate matching with participants, so cause of death is correctly attributed to the right person, and to accurately calculate survival time from date of first interview. Survival time will then be presented in months from first interview.
The data will be minimised as follows:
> Limited to a study cohort identified by Newcastle University – The sampling frame comprised of all people born in 1921 who were permanently registered with a participating general practice in Newcastle upon Tyne or North Tyneside Primary Care Trusts in the United Kingdom. Fifty three of the 64 (83%) eligible general practices participated in the study. Participants were included irrespective of current health status or place of residence. General practitioners reviewed the sample and those with end stage terminal illness and those posing a safety risk to a research nurse visiting alone were excluded. Baseline recruitment took place from 2006 over a 17-month period, resulting in 1042 recruits. Of these, 854 took part in a multidimensional health assessment (MDHA), 851 took part in the MDHA and a General Practitioner Record Review (GPRR) and 3 in the MDHA only. 188 participants only had a GPRR.
> Limited to data between September 2006 - September 2019. By 2019, only around 70 individuals were still alive and death information on this number would not significantly change the conclusions of survival analyses. Therefore, data beyond this data period is not required.
Newcastle University is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above. Newcastle University also process the data.
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.
This processing is in the public interest because the research, analysis and subsequent publications aim to inform health and social care providers (including public health and general practice) as well as the general public on how to manage and maintain the health of very old people and the services they might require.
The funding is provided by Legal and General. The funding is for the Advanced Care Research Centre (ACRC) and is not specifically limited to the study described. Funding is in place until the end of December 2025.
The funder will have no ability to suppress or otherwise limit the publication of findings.
The study team continue to collaborate with researchers who wish to use some of the study data set and are establishing new international collaborations. These collaborations will include sharing outputs derived from NHS England Data, which will be aggregated with small numbers suppressed in line with the HES Analysis Guide. The Newcastle 85+ study is part of an international collaboration called TULIPS. This is a collaborative partnership between countries who have cohort studies of the very old and includes Japan (TOOTH study), Netherlands (Leiden 85+ study), New Zealand (LILACS) and United Kingdom (Newcastle 85+ study). This collaboration is expected to maximise the use of data and increase understanding of international comparisons.
Data will be accessed by:
• PhD students affiliated with Newcastle University. These individuals will have completed mandatory data protection and confidentiality training and are subject to Newcastle University’s policies on data protection and confidentiality. The individuals accessing the data will do so under the supervision of a substantive employee of Newcastle University. Newcastle University would be responsible and liable for any work carried out by the individuals. The PhD students would only work on the data for the purposes described in this Data Sharing Agreement (DSA). There are expected to be up to two PhD students per year granted access to the NHS England data for the 85+ Study.
Processing activities
Newcastle University previously transferred data to NHS England. The data consisted of identifying details (specifically NHS Number, Date of Birth, Postcode, Gender and a unique person ID) for the cohort to be linked with NHS England data.
No further data will flow to NHS England for the purposes of this Agreement.
NHS England data previously provided the relevant records from the MRIS datasets to Newcastle University. The data:
> contained directly identifying data items including Names, NHS Number, Date of Birth, Postcode, Gender, Cause of Death, which are required to ensure accurate matching with participants.
The data will not be transferred to any other location.
The data will be stored on servers at Newcastle University.
Newcastle University uses offsite back-up services provided by Pulsant.
The data will be accessed onsite at the premises of Newcastle University only.
The data will not leave England/Wales at any time.
Access is restricted to employees, agents or PhD students of Newcastle University who have authorisation from the Data Guardians Group.
The date of death supplied by NHS England is combined with other data held by Newcastle University to derive survival (and all other event dates) as time from first interview in whole months. Newcastle University is permitted to onward share this data with other researchers subject to the conditions that the collaborating organisation:
i. must not combine it with other datasets which could potentially increase the risk of re-identification for individuals in the dataset;
ii. must not attempt to re-identify individuals in the dataset;
iii. must not onward share the dataset;
iv. must use the dataset for a defined purpose in support of the aims defined within this Agreement, and
v. must not publish the data.
Under the terms of this Agreement, Newcastle University is responsible for ensuring compliance with the above conditions and for confirming destruction of the data by any collaborating organisation once the data is no longer required for the purpose for which it was shared.
All personnel accessing the data have been appropriately trained in data protection and confidentiality.
The Data will be linked at person record level with the Newcastle 85+ study database obtained, after approval from the Data Guardians Group.
The data manager links the Data at person record level with the Newcastle 85+ study database to calculate the derived dataset for analysis. The data manager then produces subsets of derived data for each internal data request. The identifying details will be stored in a separate database to the linked, derived dataset used for analysis. All analyses will use the derived dataset. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset.
Access to full death data obtained from NHS England is restricted to a Principal Investigator (PI) and the data manager. Specific date of death will not be shared with Newcastle University researchers; instead, all dates, including date of death, are calculate as intervals in months from first interview. Date of first interview is not shared.
Researchers from the Newcastle University will analyse the data for the purposes described above.
Expected output
The expected outputs of the processing will be:
> Submissions to peer reviewed journals in the fields of ageing and primary care, e.g., Age and Ageing, PLOS Medicine, Thyroid, Journal of Hypertension, International Journal of Geriatric Psychiatry, Neurology, Journal of Gerontology and British Journal of General Practice. The study team will identify those high-ranking journals where their work will be of interest to the audience and have the most impact
> Presentations at appropriate conferences, e.g. European Geriatric Medicine Society (EUGMS) 2020 and European Society for Clinical Nutrition and Metabolism (ESPEN) 2020
The outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
> Journals
> Participant newsletters
> Meetings in the voluntary sector
> Public events
> National and International conferences
To date the study output dissemination strategy has been wide and includes the general public, academic researchers and those working in the NHS. Future dissemination will be undertaken in both the research and wider community to target older people and health and social care professionals.
Dissemination of results will continue to be in a wide field with on-going analysis in the fields of musculoskeletal medicine, nutrition, frailty, disability, polypharmacy, participation and loneliness.
Over 90 original articles have been published from the Newcastle 85+ study in peer reviewed journals, covering a wide range of health and social care issues in, a full list is available on the website - https://research.ncl.ac.uk/85plus/.
Expected measurable benefits
The Newcastle 85+ study was established in 2006 and has completed the 10-year follow up when the participants were around 97 years of age. Few other studies include people aged 97. Understanding whether or how health trajectories change at advanced ages is paramount in the face of this growing population, and if researchers are to develop more effective and timely primary health and social care services; but few other studies include people aged 97. The study team hypothesise that demands on health and social care may increase in the tenth decade and levels of disability, cognitive impairment, multimorbidity, frailty and loneliness increase.
The study is expected to identify factors associated with declining health and increased usage of health and social care. The study team anticipate this information will inform policies around optimising care in the very old age group to develop models of care that are both cost effective and efficient.
The use of the data could:
> help the system to better understand the health and care needs of populations.
> lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.
> advance understanding of regional and national trends in health and social care needs.
> advance understanding of the need for, or effectiveness of, preventative health and care measures for particular populations or conditions such as obesity and diabetes.
> inform planning health services and programmes, for example to improve equity of access, experience and outcomes.
The study team will continue to involve the established public engagement group VOICE (Valuing Our Intellectual Capital Experience - https://www.voice-global.org/) and the lay representative on the study steering committee to help develop a dissemination strategy for a lay audience.
Benefits reported so far
As the Newcastle 85+ Study is a prospective longitudinal cohort study and not a randomised controlled trial, it cannot therefore, of itself, result in changes in health and social care policy. It was intended that the study would contribute to meta-analyses to strengthen and generalise findings. Although this has taken place, it has been limited by the delay in agreeing the derived mortality data. All outputs have been in well-respected peer-reviewed academic journals but have also been disseminated at conferences (nationally and internationally) involving health and social care workers and policymakers, and contributed to government reviews of health and social care.
Members of the team have used results from the study to contribute to policy since the study provides the most comprehensive data on the health and care needs of very old populations in the UK:
> House of Lords Select Committee on Demography 'Ready for Ageing' (2012) to better understand the health and care needs of very old people. In this document, The Newcastle 85+ Study provided evidence that forecast that in England and Wales, the number of people aged 65 and over with diabetes will increase by over 45% from 2010 to 2030, and the numbers with arthritis, coronary heart disease and stroke all by over 50%
> Dilnot Commission on UK care provision (2011). Findings from the Newcastle 85+ Study on levels of capability and dependency provided important data to inform the Commission's work to better understand the care needs of an ageing population. (Jagger C, Collerton JC, Davies K, et al. Capability and dependency in the Newcastle 85+ cohort study. Projections of future care needs. BMC Geriatrics 2011; 11.)
> Why We Age – (2010) A road map for future research in ageing in Europe was generated. This is now under active dissemination (e.g., FUTUREAGE and WHYWEAGE European conference Brussels December 2010).
> Social Care Green Paper – Government review (2009). Invited to give oral evidence on drivers of healthy life expectancy in the UK and the impact on long term care to the Health Committee in connection with the Green Paper on Social Care funding reforms. Findings from the Newcastle 85+ Study provided evidence for the health and care needs of very old populations.
> Scottish Futures Forum seminar on Scotland 2030: A Sustainable Future for Social Care for Older People, November 2018 (report available at https://www.scotlandfutureforum.org/scotland-2030-a-sustainable-future-for-social-care-for-older-people/).
> As a contributor to the multi-cohort analyses of the interrelationship between nutrition and disability and frailty in the PROMISS (PRevention Of Malnutrition In Senior Subjects), a multidisciplinary international consortium funded by the European Union’s Horizon 2020 research and innovation programme, the Newcastle 85+ Study has helped form recommendations on protein intake for healthy ageing to: older adults (available in multiple languages), health professionals (available in English and German), dietitians and nutritionists (available in English and Dutch), policy makers (in English), and the food industry and SMEs (in English).
Several publications have contributed to work for the Advanced Care Research Centre at Edinburgh University to understand how to optimise strategies to help older adults to age in place. These include shedding light on crucial aspects of ageing, particularly in relation to transitions in residential status from the age of 85 to 95. Such transitions are pivotal for planning older people's housing needs, as they highlight the pattern and progression of requirements for residential care versus independent living. The Study findings have direct implications for housing policy and the development of age-friendly living environments:
Housing Policy and Age-friendly Environments: Understanding the transitions in residential status aids in anticipating the demand for different types of housing and support services, informing urban planning and the development of retirement communities.
Polypharmacy and Independence: The study closely examined how polypharmacy affects an older person's ability to live independently. When a relatively able person consults with a GP or clinical pharmacist, it is crucial that each medication's added value is carefully weighed against its potential to diminish the person's recovery and maintenance of independence.
Multiple Long-term Conditions and Mobility: The Study research indicates that multiple long-term conditions significantly affect an individual's ability to remain mobile and conduct daily activities such as shopping or walking moderate distances. Primary care providers should consider the compounded impact of diseases on a patient's autonomy when managing care plans.
Assessment of Medication Management Ability: The ability of older adults, particularly those with disabilities, visual impairments, or cognitive impairments, to manage their medications effectively is a concern irrespective of the number of prescribed drugs. The Study results advocate for healthcare professionals to routinely inquire about, evaluate, and address medication management issues within these patient groups.
Policy Implications:
Older People’s Housing Needs: Data on how older individuals transition in residential status can inform policies on housing stock, support services, and community resources, ensuring that the housing sector can accommodate the increasing needs of an ageing population.
Careful Medication Prescribing: Healthcare professionals should be advised to practice prudent prescribing, considering the implications of polypharmacy on a patient's quality of life and functional independence.
Impact on Independence: Policies and care pathways should emphasise the preservation of independence, factoring in the impact of multiple health conditions on a person's daily functioning.
Medication Management Support: Guidelines should be established for healthcare professionals to support older adults in medication management, including the use of simplification strategies, adherence aids, and regular medication reviews.
Datasets on the current version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(c)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| MRIS - Cause of Death Report | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| MRIS - Cohort Event Notification Report | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| MRIS - Flagging Current Status Report | Identifiable | Sensitive | One-Off | Consent (Reasonable Expectation) |
| MRIS - Members and Postings Report | Identifiable | Sensitive | One-Off | Consent (Reasonable Expectation) |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
No files recorded as released under this agreement.
Version history
The register lists each renewal of this agreement as a separate row. This site has 3 versions — earlier versions existed before this site's records begin.
DARS-NIC-148471-FR43L-v4.11 23 October 2023 to 30 September 2026
- Title
- MR1032 - The NEWCASTLE 85+ STUDY: BIOLOGICAL, CLINICAL & PSYCHOLOGICAL FACTORS ASSOCIATED WITH HEALTHY AGEING
- Commercial
- No
- Sublicensing
- No
- Datasets
- 4
- Files released
- 0
Datasets: MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - Members and Postings Report
What changed from DARS-NIC-148471-FR43L-v3.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2023-10-23 | |
| End date | 2026-09-30 |
Objective for processing
The average age of the population of the United Kingdom is increasing, resulting in challenges as regards health and social care. People aged 85 years and over (the very old) are a growing sector of the UK population and this is predicted to increase considerably; from 1.6 million in 2016 to 3.2 million by 2041. It is recognised that older people have complex health and social care needs as a consequence of increasing prevalence of disease and illness, often with a profound impact on everyday life. However, at the turn of the millennium few studies had investigated the health of this age group. The Newcastle 85+ study, based in the North East of England was therefore established with the following aims:
Newcastle University requires access to NHS England data for the purpose of the following research project:
(i) To determine the full spectrum of health within an inception cohort of 85 year olds, irrespective of health status, and establish the distribution and variability of a broad range of health measures within this age group.
The Newcastle 85+ Study: Biological, Clinical & Psychological Factors Associated with Healthy Ageing
The following is a summary of the aims of the research project provided by Newcastle University:
The average age of the population of the United Kingdom is increasing, resulting in challenges as regards health and social care. People aged 85 years and over (the very old) are a growing sector of the UK population and this is predicted to increase considerably; from 1.6 million in 2016 to 3.2 million by 2041. Those aged 85 and older are the fastest growing sector of the population. Some people age well, whereas others experience multiple health and social needs. Identifying why this heterogeneity exists and understanding which transitions from independence to dependence are malleable, is key to maintain wellbeing and reducing the burden on services; longitudinal observation is necessary. It is recognised that older people have complex health and social care needs as a consequence of increasing prevalence of disease and illness, often with a profound impact on everyday life. However, at the turn of the millennium few studies had investigated the health of this age group. The Newcastle 85+ study is a prospective observational longitudinal population cohort study. The study, based in the North-East of England was therefore established with the following aims:
(i) To determine the full spectrum of health within an inception cohort of 85-year-olds, irrespective of health status, and establish the distribution and variability of a broad range of health measures within this age group.
[1 paragraph unchanged]
The Newcastle 85+ study is currently funded by the National Institute of Health Research School for Primary Care.
Specific research questions include:
The Newcastle 85+ study is a prospective observational longitudinal population cohort study. Baseline recruitment commenced in 2006. The sampling frame comprised of all people born in 1921 who were permanently registered with a participating general practice in Newcastle upon Tyne or North Tyneside Primary Care Trusts in the United Kingdom. Fifty three of the 64 (83%) eligible general practices participated in the study. Participants were included irrespective of current health status or place of residence. General practitioners reviewed the sample and those with end stage terminal illness and those posing a safety risk to a research nurse visiting alone were excluded. Baseline recruitment took place over a 17-month period.
(i) Confirming trajectories of disability and estimating years spent with disability and frailty between age 85 and 97, with the aim to identify potentially modifiable risk factors;
At baseline 1470 people born in 1921 were identified. Contact was established with 1409 people and 1042 agreed to participate in the study. Of these 854 took part in a multidimensional health assessment (MDHA), 851 took part in the MDHA and a General Practitioner Record Review (GPRR) and 3 in the MDHA only. 188 participants only had a GPRR.
(ii) Identifying predictors of “healthy” ageing to age 97;
Four follow up phases have followed baseline data collection at 18 months (phase 2), 3 years (phase 3), 5 years (phase 4) and 10 years (phase 5). Three methods of data collection were utilised: (i) a multidimensional health assessment - MDHA (questionnaires, measurement and function tests, blood tests), (ii) General Practice record review (GPRR) and (iii) mortality data obtained through NHS Digital. The MDHA was undertaken in all phases and was identical in phases 1 to 3 and reduced in phases 4 and 5 due to the ageing study population. An identical GPRR took place at baseline and phases 3, 4 and 5, and mortality data was received from NHS Digital 3-monthly throughout the study.
(iii) Establishing how the demand on health and social care resources change between the ninth and tenth decade, particularly regarding informal care and profiling current health and social care use (including informal unpaid care, to inform policy makers on how to optimally manage this age group;
Newcastle University now requests to retain the current mortality data but not receive any further for use in the Newcastle 85+ Study. Newcastle University instigated this work and will be the only organisation to have access to record level data supplied by NHS Digital. Newcastle University is therefore the sole data controller, who will also process data for this application. Retention of the mortality data will enable Newcastle University to undertake survival analysis since there are very few participants now survivng. Participants have consented to their data being used, including in the event of their death.
(iv) Determining late life factors influencing frailty, in particular cognition; and,
Newcastle University are using GDPR Article 6(1)(e) (processing is necessary for the performance of a task in the public interest or in the exercise of official authority vested in the controller) and Article 9(2)(j) to retain and process the data.
(v) Exploring the levels of participation and loneliness and its link to health and social care usage.
The Newcastle 85+ study is one of the largest cohorts of the "very old" in the United Kingdom and has completed 10th year of follow-up. The detailed information over a 10-year period regarding health and social care issues together with the mortality data allows study to identify what factors are associated with healthy ageing in this very old age group, particularly using the mortality data in conjunction with other outcomes e.g., disability, frailty. Very few studies have information on people of this age, and the mortality data is important for future analyses.
Recruitment into the study commenced in 2006. Four follow up phases have followed baseline data collection at 18 months (phase 2), 3 years (phase 3), 5 years (phase 4) and 10 years (phase 5). Three methods of data collection were utilised: (i) a multidimensional health assessment - MDHA (questionnaires, measurement and function tests, blood tests), (ii) General Practice record review (GPRR) and (iii) mortality data obtained through NHS England. The MDHA was undertaken in all phases and was identical in phases 1 to 3 and reduced in phases 4 and 5 due to the ageing study population. An identical GPRR took place at baseline and phases 3, 4 and 5, and mortality data was received from NHS England 3-monthly throughout the study.
Data are currently being used for analyses in the Older People and Frailty NIHR Policy Research Unit at Newcastle University to look at the size of interventions needed to narrow the gap in DFLE between rich and poor, with a focus on the key long-term conditions and common comorbidities that contribute most to DFLE. This was at request from the Department from Health and Social Care.
The following NHS England data will be accessed:
> Mortality – necessary because mortality data will enable Newcastle University to undertake survival analysis since there are very few participants now surviving. This data will help identify risk of mortality for specific risk factors, identify new conditions not previously identified in GP record review, and to accurately calculate population at risk for incidence.
> Demographics – necessary to establish whether a participant was relocated to a care home and subsequently passed away at that location. This provides invaluable context, enriching Newcastle University’s understanding of environmental and locational factors influencing end-of-life care and outcomes.
The level of the data will be:
> Identifiable – necessary to ensure accurate matching with participants, so cause of death is correctly attributed to the right person, and to accurately calculate survival time from date of first interview. Survival time will then be presented in months from first interview.
The data will be minimised as follows:
> Limited to a study cohort identified by Newcastle University – The sampling frame comprised of all people born in 1921 who were permanently registered with a participating general practice in Newcastle upon Tyne or North Tyneside Primary Care Trusts in the United Kingdom. Fifty three of the 64 (83%) eligible general practices participated in the study. Participants were included irrespective of current health status or place of residence. General practitioners reviewed the sample and those with end stage terminal illness and those posing a safety risk to a research nurse visiting alone were excluded. Baseline recruitment took place from 2006 over a 17-month period, resulting in 1042 recruits. Of these, 854 took part in a multidimensional health assessment (MDHA), 851 took part in the MDHA and a General Practitioner Record Review (GPRR) and 3 in the MDHA only. 188 participants only had a GPRR.
> Limited to data between September 2006 - September 2019. By 2019, only around 70 individuals were still alive and death information on this number would not significantly change the conclusions of survival analyses. Therefore, data beyond this data period is not required.
Newcastle University is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above. Newcastle University also process the data.
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.
This processing is in the public interest because the research, analysis and subsequent publications aim to inform health and social care providers (including public health and general practice) as well as the general public on how to manage and maintain the health of very old people and the services they might require.
The funding is provided by Legal and General. The funding is for the Advanced Care Research Centre (ACRC) and is not specifically limited to the study described. Funding is in place until the end of December 2025.
The funder will have no ability to suppress or otherwise limit the publication of findings.
The study team continue to collaborate with researchers who wish to use some of the study data set and are establishing new international collaborations. These collaborations will include sharing outputs derived from NHS England Data, which will be aggregated with small numbers suppressed in line with the HES Analysis Guide. The Newcastle 85+ study is part of an international collaboration called TULIPS. This is a collaborative partnership between countries who have cohort studies of the very old and includes Japan (TOOTH study), Netherlands (Leiden 85+ study), New Zealand (LILACS) and United Kingdom (Newcastle 85+ study). This collaboration is expected to maximise the use of data and increase understanding of international comparisons.
Data will be accessed by:
• PhD students affiliated with Newcastle University. These individuals will have completed mandatory data protection and confidentiality training and are subject to Newcastle University’s policies on data protection and confidentiality. The individuals accessing the data will do so under the supervision of a substantive employee of Newcastle University. Newcastle University would be responsible and liable for any work carried out by the individuals. The PhD students would only work on the data for the purposes described in this Data Sharing Agreement (DSA). There are expected to be up to two PhD students per year granted access to the NHS England data for the 85+ Study.
Processing activities
Newcastle University previously transferred data to NHS England.
The
University
data consisted
of
Newcastle previously securely transferred files of identifiers for patients in the Newcastle 85+ Study (NHS
identifying details (specifically NHS
Number, Date of
birth, sex
Birth, Postcode, Gender
and
postcode plus
a unique
study
person
ID)
for the cohort
to
be linked with
NHS
Digital. NHS Digital returned linked Mortality data from 2008 data the unique study ID, Date of Death, Full Name, Date of Birth, Area, Occupation, Cause of death (words), Cause of Death(Code). NHS Digital have received the full study cohort and the study will not be adding any additional participants.
England data.
On receipt of cohort linked data the Newcastle 85+ study research team undertake the following processing activities:
No further data will flow to NHS England for the purposes of this Agreement.
The University of Newcastle stores the data obtained from NHS Digital on a secure area network and access is restricted to individuals working on the Newcastle 85+ study. Access to full death data obtained from NHS Digital is restricted to a Principal Investigator (PI) who receives the data and the research nurse who enters the data onto the database.
NHS England data previously provided the relevant records from the MRIS datasets to Newcastle University. The data:
Date of death, cause of death (Words), Cause of Death(Code) are added to the Newcastle 85+ study database. The database is pseudo-anonymised by unique study ID. Full patient information is kept on the patient Consent forms and patient lists which are kept within the locked filing cabinets within the Newcastle 85+ study office. Access to the cabinets is only by the PI and research nurse.
> contained directly identifying data items including Names, NHS Number, Date of Birth, Postcode, Gender, Cause of Death, which are required to ensure accurate matching with participants.
Upon completion of checks, an extract of identifiable data (Date of Death and Date of Birth) is taken from the Newcastle 85+ study database and linked to fields from the cohort linked data to calculate variables such as exact age at interview, survival time from first interview, length of survival from diagnosis, total length of follow-up if such variables are relevant to specific research questions. Specific date of death will not be shared with Newcastle University researchers; instead date of first interview (baseline recruitment to study) is shared, and month and year of death.
The data will not be transferred to any other location.
Researchers who are not substantively employed by Newcastle University may work in collaboration with the study team but would only have access to outputs, which would be aggregated with small numbers suppressed in line with the HES Analysis Guide, or sufficiently processed in agreement with NHS Digital. If a researcher from another organisation wishes to access record level NHS Digital Data then an amendment application will be submitted to update the data sharing agreement with NHS Digital to include any new collaborations prior to them receiving the data.
The data will be stored on servers at Newcastle University.
The Newcastle University study team access data via a secure server and they are granted access after they successfully complete training. They must work on the data in that location and any output must be saved back to that location. They are instructed that no copies of the data are to be taken and placed in any other locations.
Newcastle University uses offsite back-up services provided by Pulsant.
Summaries of the results will be presented orally at conferences and are intended to be published in academic or medical journals. All outputs will be aggregated with small numbers suppressed and in line with the HES Analysis Guide.
The data will be accessed onsite at the premises of Newcastle University only.
The Newcastle 85+ study is one of the largest cohorts of the "very old" in the United Kingdom and is now in its 10th year of follow-up. Throughout the study data regarding mortality has been received from NHS Digital. Additionally, detailed information over a 10 year period regarding health and social care issues has been collected. The combination of this data will now allow the study to map in more detail mortality in this very old age group and identify what factors are associated with healthy ageing. Additionally, the mortality data will be used for further analyses of mortality, often in conjunction with other outcomes e.g. disability, frailty. Continued receipt of mortality data will be extremely helpful in order to profile this population further. Very few studies have information on people of this age, and the mortality data will become increasingly important for future analyses.
The data will not leave England/Wales at any time.
All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).
Access is restricted to employees, agents or PhD students of Newcastle University who have authorisation from the Data Guardians Group.
The date of death supplied by NHS England is combined with other data held by Newcastle University to derive survival (and all other event dates) as time from first interview in whole months. Newcastle University is permitted to onward share this data with other researchers subject to the conditions that the collaborating organisation:
i. must not combine it with other datasets which could potentially increase the risk of re-identification for individuals in the dataset;
ii. must not attempt to re-identify individuals in the dataset;
iii. must not onward share the dataset;
iv. must use the dataset for a defined purpose in support of the aims defined within this Agreement, and
v. must not publish the data.
Under the terms of this Agreement, Newcastle University is responsible for ensuring compliance with the above conditions and for confirming destruction of the data by any collaborating organisation once the data is no longer required for the purpose for which it was shared.
All personnel accessing the data have been appropriately trained in data protection and confidentiality.
The Data will be linked at person record level with the Newcastle 85+ study database obtained, after approval from the Data Guardians Group.
The data manager links the Data at person record level with the Newcastle 85+ study database to calculate the derived dataset for analysis. The data manager then produces subsets of derived data for each internal data request. The identifying details will be stored in a separate database to the linked, derived dataset used for analysis. All analyses will use the derived dataset. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset.
Access to full death data obtained from NHS England is restricted to a Principal Investigator (PI) and the data manager. Specific date of death will not be shared with Newcastle University researchers; instead, all dates, including date of death, are calculate as intervals in months from first interview. Date of first interview is not shared.
Researchers from the Newcastle University will analyse the data for the purposes described above.
Expected output
Those aged 85 and older are the fastest growing sector of the population. Some people age well, whereas others experience multiple health and social needs. Identifying why this heterogeneity exists and understanding which transitions from independence to dependence are malleable, is key to maintain wellbeing and reducing the burden on services; longitudinal observation is necessary. The Newcastle 85+ study was established in 2006 and is now nearing completion of the 10 year follow up, the participants now being 97 years of age. Few other studies include people aged 97. The study team hypothesise that demands on health and social care may increase in the tenth decade and levels of disability, cognitive impairment, multimorbidity, frailty and loneliness increase, therefore this data collection at aged 97 years is valuable. The study team specifically want to identify: (i) trajectories of disability and estimating years spent with disability and frailty between age 85 and 95, (ii) identify predictors of “healthy” ageing to age 97, (iii) Establish how health and social care resources change between the ninth and tenth decade, particularly regarding informal care, (iv) determine late life factors influencing frailty, in particular cognition, (v) Explore the levels of participation and loneliness.
The expected outputs of the processing will be:
Much of this analysis will involve survival analysis, and hence, the mortality data remains a vital piece of information on participants in this cohort. Once data collection is complete and prepared for analysis the study team aim to publish outputs over the next 2 years (2019-2021). The study team continue to collaborate with researchers who wish to use some of the study data set and are establishing new international collaborations. These collaborations will include sharing outputs derived from NHS Digital, which will be aggregated with small numbers suppressed in line with the HES Analysis Guide. The Newcastle 85+ study is part of an international collaboration called TULIPS. This is a collaborative partnership between countries who have cohort studies of the very old and includes Japan (TOOTH study), Netherlands (Leiden 85+ study), New Zealand (LILACS) and United Kingdom (Newcastle 85+ study). This collaboration will maximise the use of data and increase understanding of international comparisons. Dissemination of results will be in a wide field due to on-going analysis in the fields of musculoskeletal medicine, nutrition, frailty, disability, polypharmacy, participation and loneliness.
> Submissions to peer reviewed journals in the fields of ageing and primary care, e.g., Age and Ageing, PLOS Medicine, Thyroid, Journal of Hypertension, International Journal of Geriatric Psychiatry, Neurology, Journal of Gerontology and British Journal of General Practice. The study team will identify those high-ranking journals where their work will be of interest to the audience and have the most impact
To date the study output dissemination strategy has been wide and includes the general public, academic researchers and those working in the NHS. Future dissemination will be undertaken in both the research and wider community to target older people and health and social care professionals. The study team will continue to involve the established public engagement group VOICE (Valuing Our Intellectual Capital Experience - https://www.voice-global.org/ ) and the lay representative on the study steering committee to help develop a dissemination strategy for a lay audience. Participant feedback will consist of an individual newsletter to all participants outlining the major findings of the study and the study team will highlight the work through newsletters and meetings in the voluntary sector. The study team has a track record of publishing in high quality peer reviewed journals and aims to publish in journals in the fields of ageing and primary care; subject-specific journals will be used where appropriate. The study team will identify those high ranking journals where their work will be of interest to the audience and have the most impact. Previously this has included the British Medical Journal (BMJ), Lancet, Age and Ageing, International Journal of Gerontology, Journal of the American Geriatrics Society, amongst others, and they will continue to target such journals. The study team will present at the major conferences in the field of primary care (Society of Academic Primary Care) and care of older people (British Geriatrics Society, International Association of Gerontology and Geriatrics) in order to disseminate the results to a wide audience. The study findings will be relevant to commissioners and policy makers who shape the future health and social care services for the very old and the study team will continue to aim to present to this audience.
> Presentations at appropriate conferences, e.g. European Geriatric Medicine Society (EUGMS) 2020 and European Society for Clinical Nutrition and Metabolism (ESPEN) 2020
The outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
> Journals
> Participant newsletters
> Meetings in the voluntary sector
> Public events
> National and International conferences
To date the study output dissemination strategy has been wide and includes the general public, academic researchers and those working in the NHS. Future dissemination will be undertaken in both the research and wider community to target older people and health and social care professionals.
Dissemination of results will continue to be in a wide field with on-going analysis in the fields of musculoskeletal medicine, nutrition, frailty, disability, polypharmacy, participation and loneliness.
Over 90 original articles have been published from the Newcastle 85+ study in peer reviewed journals, covering a wide range of health and social care issues in, a full list is available on the website - https://research.ncl.ac.uk/85plus/.
Expected measurable benefits
The Newcastle 85+ study
cohort (born
was established
in
1921
2006
and
has completed the 10-year follow up when the participants were around 97 years of age. Few other studies include people
aged
85 at baseline) has been followed to age 97 years. One important finding has been uncovering how disability evolves between age 85 and 90.
97.
Understanding whether or how health trajectories change at advanced ages is paramount
[47 words unchanged]
decade and levels of disability, cognitive impairment, multimorbidity, frailty and loneliness increase.
Specific research questions include: (i) Confirming trajectories of disability and estimating years spent with disability and frailty between age 85 and 97, with the aim to identify potentially modifiable risk factors (ii) Identifying predictors of “healthy” ageing to age 97, (iii) Establishing how the demand on health and social care resources change between the ninth and tenth decade, particularly regarding informal care. Profiling current health and social care use (including informal unpaid care) will inform policy makers on how to optimally manage this age group. (iv) Determine late life factors influencing frailty, in particular cognition? (v) Exploring the levels of participation and loneliness and its link to health and social care usage.
The study is expected to identify factors associated with declining health and increased usage of health and social care. The study team anticipate this information will inform policies around optimising care in the very old age group to develop models of care that are both cost effective and efficient.
Addressing the above research questions will identify factors associated with declining health and increased usage of health and social care. The study team anticipate this information can contribute to the development of policies around optimising care in the very old age group to develop models of care that are both cost effective and efficient.
The use of the data could:
> help the system to better understand the health and care needs of populations.
> lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.
> advance understanding of regional and national trends in health and social care needs.
> advance understanding of the need for, or effectiveness of, preventative health and care measures for particular populations or conditions such as obesity and diabetes.
> inform planning health services and programmes, for example to improve equity of access, experience and outcomes.
The study team will continue to involve the established public engagement group VOICE (Valuing Our Intellectual Capital Experience - https://www.voice-global.org/) and the lay representative on the study steering committee to help develop a dissemination strategy for a lay audience.
Benefits reported
Over 60 original articles have been published from the Newcastle 85+ study in peer reviewed journals, covering a wide range of health and social care issues in, a full list is available on the website - https://research.ncl.ac.uk/85plus/
As the Newcastle 85+ Study is a prospective longitudinal cohort study and not a randomised controlled trial, it cannot therefore, of itself, result in changes in health and social care policy. It was intended that the study would contribute to meta-analyses to strengthen and generalise findings. Although this has taken place, it has been limited by the delay in agreeing the derived mortality data. All outputs have been in well-respected peer-reviewed academic journals but have also been disseminated at conferences (nationally and internationally) involving health and social care workers and policymakers, and contributed to government reviews of health and social care.
Results have also been disseminated at public events and national and international conferences, where symposia have been held based on the study.
Members of the team have used results from the study to contribute to policy since the study provides the most comprehensive data on the health and care needs of very old populations in the UK:
Members of the team have used results from the study to contribute to policy:-
> House of Lords Select Committee on Demography 'Ready for Ageing' (2012) to better understand the health and care needs of very old people. In this document, The Newcastle 85+ Study provided evidence that forecast that in England and Wales, the number of people aged 65 and over with diabetes will increase by over 45% from 2010 to 2030, and the numbers with arthritis, coronary heart disease and stroke all by over 50%
House of Lords Select Committee on Demography 'Ready for Ageing' (2012)
> Dilnot Commission on UK care provision (2011). Findings from the Newcastle 85+ Study on levels of capability and dependency provided important data to inform the Commission's work to better understand the care needs of an ageing population. (Jagger C, Collerton JC, Davies K, et al. Capability and dependency in the Newcastle 85+ cohort study. Projections of future care needs. BMC Geriatrics 2011; 11.)
Dilnot Commission on UK care provision (2011). Findings from the Newcastle 85+ Study on levels of capability and dependency provided important data to inform the Commission's work. (Jagger C, Collerton JC, Davies K, et al. Capability and dependency in the Newcastle 85+ cohort study. Projections of future care needs. BMC Geriatrics 2011; 11.)
> Why We Age – (2010) A road map for future research in ageing in Europe was generated. This is now under active dissemination (e.g., FUTUREAGE and WHYWEAGE European conference Brussels December 2010).
Swedish Social Council review on healthy ageing Government review 2010)
> Social Care Green Paper – Government review (2009). Invited to give oral evidence on drivers of healthy life expectancy in the UK and the impact on long term care to the Health Committee in connection with the Green Paper on Social Care funding reforms. Findings from the Newcastle 85+ Study provided evidence for the health and care needs of very old populations.
Why We Age – (2010) A road map for future research in ageing in Europe was generated. This is now under active dissemination (e.g. FUTUREAGE and WHYWEAGE European conference Brussels December 2010).
> Scottish Futures Forum seminar on Scotland 2030: A Sustainable Future for Social Care for Older People, November 2018 (report available at https://www.scotlandfutureforum.org/scotland-2030-a-sustainable-future-for-social-care-for-older-people/).
Social Care Green Paper – Government review (2009). Invited to give oral evidence on drivers of healthy life expectancy in the UK and the impact on long term care to the Health Committee in connection with the Green Paper on Social Care funding reforms.
> As a contributor to the multi-cohort analyses of the interrelationship between nutrition and disability and frailty in the PROMISS (PRevention Of Malnutrition In Senior Subjects), a multidisciplinary international consortium funded by the European Union’s Horizon 2020 research and innovation programme, the Newcastle 85+ Study has helped form recommendations on protein intake for healthy ageing to: older adults (available in multiple languages), health professionals (available in English and German), dietitians and nutritionists (available in English and Dutch), policy makers (in English), and the food industry and SMEs (in English).
Several publications have contributed to work for the Advanced Care Research Centre at Edinburgh University to understand how to optimise strategies to help older adults to age in place. These include shedding light on crucial aspects of ageing, particularly in relation to transitions in residential status from the age of 85 to 95. Such transitions are pivotal for planning older people's housing needs, as they highlight the pattern and progression of requirements for residential care versus independent living. The Study findings have direct implications for housing policy and the development of age-friendly living environments:
Housing Policy and Age-friendly Environments: Understanding the transitions in residential status aids in anticipating the demand for different types of housing and support services, informing urban planning and the development of retirement communities.
Polypharmacy and Independence: The study closely examined how polypharmacy affects an older person's ability to live independently. When a relatively able person consults with a GP or clinical pharmacist, it is crucial that each medication's added value is carefully weighed against its potential to diminish the person's recovery and maintenance of independence.
Multiple Long-term Conditions and Mobility: The Study research indicates that multiple long-term conditions significantly affect an individual's ability to remain mobile and conduct daily activities such as shopping or walking moderate distances. Primary care providers should consider the compounded impact of diseases on a patient's autonomy when managing care plans.
Assessment of Medication Management Ability: The ability of older adults, particularly those with disabilities, visual impairments, or cognitive impairments, to manage their medications effectively is a concern irrespective of the number of prescribed drugs. The Study results advocate for healthcare professionals to routinely inquire about, evaluate, and address medication management issues within these patient groups.
Policy Implications:
Older People’s Housing Needs: Data on how older individuals transition in residential status can inform policies on housing stock, support services, and community resources, ensuring that the housing sector can accommodate the increasing needs of an ageing population.
Careful Medication Prescribing: Healthcare professionals should be advised to practice prudent prescribing, considering the implications of polypharmacy on a patient's quality of life and functional independence.
Impact on Independence: Policies and care pathways should emphasise the preservation of independence, factoring in the impact of multiple health conditions on a person's daily functioning.
Medication Management Support: Guidelines should be established for healthcare professionals to support older adults in medication management, including the use of simplification strategies, adherence aids, and regular medication reviews.
DARS-NIC-148471-FR43L-v3.2 7 January 2020 to 30 September 2022
- Title
- MR1032 - The NEWCASTLE 85+ STUDY: BIOLOGICAL, CLINICAL & PSYCHOLOGICAL FACTORS ASSOCIATED WITH HEALTHY AGEING
- Commercial
- No
- Sublicensing
- No
- Datasets
- 4
- Files released
- 0
Datasets: MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - Members and Postings Report
What changed from DARS-NIC-148471-FR43L-v2.3
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2020-01-07 |
Processing activities
[2 paragraphs unchanged]
The University of Newcastle stores the data obtained from NHS Digital on
an encrypted
a
secure area network and access is restricted to individuals working on the
[22 words unchanged]
data and the research nurse who enters the data onto the database.
Date of death, cause of death (Words), Cause of Death(Code) are added to the Newcastle 85+ study
database which is encrypted.
database.
The database is pseudo-anonymised by unique study ID. Full patient information is
[10 words unchanged]
are kept within the locked filing cabinets within the Newcastle 85+ study
office, access
office. Access
to the cabinets is only by the PI and research nurse.
[6 paragraphs unchanged]
Unchanged: Objective for processing, Expected output, Expected measurable benefits, Benefits reported.
Objective for processing
The average age of the population of the United Kingdom is increasing, resulting in challenges as regards health and social care. People aged 85 years and over (the very old) are a growing sector of the UK population and this is predicted to increase considerably; from 1.6 million in 2016 to 3.2 million by 2041. It is recognised that older people have complex health and social care needs as a consequence of increasing prevalence of disease and illness, often with a profound impact on everyday life. However, at the turn of the millennium few studies had investigated the health of this age group. The Newcastle 85+ study, based in the North East of England was therefore established with the following aims:
(i) To determine the full spectrum of health within an inception cohort of 85 year olds, irrespective of health status, and establish the distribution and variability of a broad range of health measures within this age group.
(ii) To examine in unprecedented detail, the health trajectories and outcomes as the cohort aged and the associations with underlying biological, medical and social factors.
The Newcastle 85+ study is currently funded by the National Institute of Health Research School for Primary Care.
The Newcastle 85+ study is a prospective observational longitudinal population cohort study. Baseline recruitment commenced in 2006. The sampling frame comprised of all people born in 1921 who were permanently registered with a participating general practice in Newcastle upon Tyne or North Tyneside Primary Care Trusts in the United Kingdom. Fifty three of the 64 (83%) eligible general practices participated in the study. Participants were included irrespective of current health status or place of residence. General practitioners reviewed the sample and those with end stage terminal illness and those posing a safety risk to a research nurse visiting alone were excluded. Baseline recruitment took place over a 17-month period.
At baseline 1470 people born in 1921 were identified. Contact was established with 1409 people and 1042 agreed to participate in the study. Of these 854 took part in a multidimensional health assessment (MDHA), 851 took part in the MDHA and a General Practitioner Record Review (GPRR) and 3 in the MDHA only. 188 participants only had a GPRR.
Four follow up phases have followed baseline data collection at 18 months (phase 2), 3 years (phase 3), 5 years (phase 4) and 10 years (phase 5). Three methods of data collection were utilised: (i) a multidimensional health assessment - MDHA (questionnaires, measurement and function tests, blood tests), (ii) General Practice record review (GPRR) and (iii) mortality data obtained through NHS Digital. The MDHA was undertaken in all phases and was identical in phases 1 to 3 and reduced in phases 4 and 5 due to the ageing study population. An identical GPRR took place at baseline and phases 3, 4 and 5, and mortality data was received from NHS Digital 3-monthly throughout the study.
Newcastle University now requests to retain the current mortality data but not receive any further for use in the Newcastle 85+ Study. Newcastle University instigated this work and will be the only organisation to have access to record level data supplied by NHS Digital. Newcastle University is therefore the sole data controller, who will also process data for this application. Retention of the mortality data will enable Newcastle University to undertake survival analysis since there are very few participants now survivng. Participants have consented to their data being used, including in the event of their death.
Newcastle University are using GDPR Article 6(1)(e) (processing is necessary for the performance of a task in the public interest or in the exercise of official authority vested in the controller) and Article 9(2)(j) to retain and process the data.
Expected output
Those aged 85 and older are the fastest growing sector of the population. Some people age well, whereas others experience multiple health and social needs. Identifying why this heterogeneity exists and understanding which transitions from independence to dependence are malleable, is key to maintain wellbeing and reducing the burden on services; longitudinal observation is necessary. The Newcastle 85+ study was established in 2006 and is now nearing completion of the 10 year follow up, the participants now being 97 years of age. Few other studies include people aged 97. The study team hypothesise that demands on health and social care may increase in the tenth decade and levels of disability, cognitive impairment, multimorbidity, frailty and loneliness increase, therefore this data collection at aged 97 years is valuable. The study team specifically want to identify: (i) trajectories of disability and estimating years spent with disability and frailty between age 85 and 95, (ii) identify predictors of “healthy” ageing to age 97, (iii) Establish how health and social care resources change between the ninth and tenth decade, particularly regarding informal care, (iv) determine late life factors influencing frailty, in particular cognition, (v) Explore the levels of participation and loneliness.
Much of this analysis will involve survival analysis, and hence, the mortality data remains a vital piece of information on participants in this cohort. Once data collection is complete and prepared for analysis the study team aim to publish outputs over the next 2 years (2019-2021). The study team continue to collaborate with researchers who wish to use some of the study data set and are establishing new international collaborations. These collaborations will include sharing outputs derived from NHS Digital, which will be aggregated with small numbers suppressed in line with the HES Analysis Guide. The Newcastle 85+ study is part of an international collaboration called TULIPS. This is a collaborative partnership between countries who have cohort studies of the very old and includes Japan (TOOTH study), Netherlands (Leiden 85+ study), New Zealand (LILACS) and United Kingdom (Newcastle 85+ study). This collaboration will maximise the use of data and increase understanding of international comparisons. Dissemination of results will be in a wide field due to on-going analysis in the fields of musculoskeletal medicine, nutrition, frailty, disability, polypharmacy, participation and loneliness.
To date the study output dissemination strategy has been wide and includes the general public, academic researchers and those working in the NHS. Future dissemination will be undertaken in both the research and wider community to target older people and health and social care professionals. The study team will continue to involve the established public engagement group VOICE (Valuing Our Intellectual Capital Experience - https://www.voice-global.org/ ) and the lay representative on the study steering committee to help develop a dissemination strategy for a lay audience. Participant feedback will consist of an individual newsletter to all participants outlining the major findings of the study and the study team will highlight the work through newsletters and meetings in the voluntary sector. The study team has a track record of publishing in high quality peer reviewed journals and aims to publish in journals in the fields of ageing and primary care; subject-specific journals will be used where appropriate. The study team will identify those high ranking journals where their work will be of interest to the audience and have the most impact. Previously this has included the British Medical Journal (BMJ), Lancet, Age and Ageing, International Journal of Gerontology, Journal of the American Geriatrics Society, amongst others, and they will continue to target such journals. The study team will present at the major conferences in the field of primary care (Society of Academic Primary Care) and care of older people (British Geriatrics Society, International Association of Gerontology and Geriatrics) in order to disseminate the results to a wide audience. The study findings will be relevant to commissioners and policy makers who shape the future health and social care services for the very old and the study team will continue to aim to present to this audience.
Benefits reported
Over 60 original articles have been published from the Newcastle 85+ study in peer reviewed journals, covering a wide range of health and social care issues in, a full list is available on the website - https://research.ncl.ac.uk/85plus/
Results have also been disseminated at public events and national and international conferences, where symposia have been held based on the study.
Members of the team have used results from the study to contribute to policy:-
House of Lords Select Committee on Demography 'Ready for Ageing' (2012)
Dilnot Commission on UK care provision (2011). Findings from the Newcastle 85+ Study on levels of capability and dependency provided important data to inform the Commission's work. (Jagger C, Collerton JC, Davies K, et al. Capability and dependency in the Newcastle 85+ cohort study. Projections of future care needs. BMC Geriatrics 2011; 11.)
Swedish Social Council review on healthy ageing Government review 2010)
Why We Age – (2010) A road map for future research in ageing in Europe was generated. This is now under active dissemination (e.g. FUTUREAGE and WHYWEAGE European conference Brussels December 2010).
Social Care Green Paper – Government review (2009). Invited to give oral evidence on drivers of healthy life expectancy in the UK and the impact on long term care to the Health Committee in connection with the Green Paper on Social Care funding reforms.
DARS-NIC-148471-FR43L-v2.3 1 October 2019 to 30 September 2022
- Title
- MR1032 - The NEWCASTLE 85+ STUDY: BIOLOGICAL, CLINICAL & PSYCHOLOGICAL FACTORS ASSOCIATED WITH HEALTHY AGEING
- Commercial
- No
- Sublicensing
- No
- Datasets
- 4
- Files released
- 0
Datasets: MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - Members and Postings Report
Objective for processing
The average age of the population of the United Kingdom is increasing, resulting in challenges as regards health and social care. People aged 85 years and over (the very old) are a growing sector of the UK population and this is predicted to increase considerably; from 1.6 million in 2016 to 3.2 million by 2041. It is recognised that older people have complex health and social care needs as a consequence of increasing prevalence of disease and illness, often with a profound impact on everyday life. However, at the turn of the millennium few studies had investigated the health of this age group. The Newcastle 85+ study, based in the North East of England was therefore established with the following aims:
(i) To determine the full spectrum of health within an inception cohort of 85 year olds, irrespective of health status, and establish the distribution and variability of a broad range of health measures within this age group.
(ii) To examine in unprecedented detail, the health trajectories and outcomes as the cohort aged and the associations with underlying biological, medical and social factors.
The Newcastle 85+ study is currently funded by the National Institute of Health Research School for Primary Care.
The Newcastle 85+ study is a prospective observational longitudinal population cohort study. Baseline recruitment commenced in 2006. The sampling frame comprised of all people born in 1921 who were permanently registered with a participating general practice in Newcastle upon Tyne or North Tyneside Primary Care Trusts in the United Kingdom. Fifty three of the 64 (83%) eligible general practices participated in the study. Participants were included irrespective of current health status or place of residence. General practitioners reviewed the sample and those with end stage terminal illness and those posing a safety risk to a research nurse visiting alone were excluded. Baseline recruitment took place over a 17-month period.
At baseline 1470 people born in 1921 were identified. Contact was established with 1409 people and 1042 agreed to participate in the study. Of these 854 took part in a multidimensional health assessment (MDHA), 851 took part in the MDHA and a General Practitioner Record Review (GPRR) and 3 in the MDHA only. 188 participants only had a GPRR.
Four follow up phases have followed baseline data collection at 18 months (phase 2), 3 years (phase 3), 5 years (phase 4) and 10 years (phase 5). Three methods of data collection were utilised: (i) a multidimensional health assessment - MDHA (questionnaires, measurement and function tests, blood tests), (ii) General Practice record review (GPRR) and (iii) mortality data obtained through NHS Digital. The MDHA was undertaken in all phases and was identical in phases 1 to 3 and reduced in phases 4 and 5 due to the ageing study population. An identical GPRR took place at baseline and phases 3, 4 and 5, and mortality data was received from NHS Digital 3-monthly throughout the study.
Newcastle University now requests to retain the current mortality data but not receive any further for use in the Newcastle 85+ Study. Newcastle University instigated this work and will be the only organisation to have access to record level data supplied by NHS Digital. Newcastle University is therefore the sole data controller, who will also process data for this application. Retention of the mortality data will enable Newcastle University to undertake survival analysis since there are very few participants now survivng. Participants have consented to their data being used, including in the event of their death.
Newcastle University are using GDPR Article 6(1)(e) (processing is necessary for the performance of a task in the public interest or in the exercise of official authority vested in the controller) and Article 9(2)(j) to retain and process the data.
Expected output
Those aged 85 and older are the fastest growing sector of the population. Some people age well, whereas others experience multiple health and social needs. Identifying why this heterogeneity exists and understanding which transitions from independence to dependence are malleable, is key to maintain wellbeing and reducing the burden on services; longitudinal observation is necessary. The Newcastle 85+ study was established in 2006 and is now nearing completion of the 10 year follow up, the participants now being 97 years of age. Few other studies include people aged 97. The study team hypothesise that demands on health and social care may increase in the tenth decade and levels of disability, cognitive impairment, multimorbidity, frailty and loneliness increase, therefore this data collection at aged 97 years is valuable. The study team specifically want to identify: (i) trajectories of disability and estimating years spent with disability and frailty between age 85 and 95, (ii) identify predictors of “healthy” ageing to age 97, (iii) Establish how health and social care resources change between the ninth and tenth decade, particularly regarding informal care, (iv) determine late life factors influencing frailty, in particular cognition, (v) Explore the levels of participation and loneliness.
Much of this analysis will involve survival analysis, and hence, the mortality data remains a vital piece of information on participants in this cohort. Once data collection is complete and prepared for analysis the study team aim to publish outputs over the next 2 years (2019-2021). The study team continue to collaborate with researchers who wish to use some of the study data set and are establishing new international collaborations. These collaborations will include sharing outputs derived from NHS Digital, which will be aggregated with small numbers suppressed in line with the HES Analysis Guide. The Newcastle 85+ study is part of an international collaboration called TULIPS. This is a collaborative partnership between countries who have cohort studies of the very old and includes Japan (TOOTH study), Netherlands (Leiden 85+ study), New Zealand (LILACS) and United Kingdom (Newcastle 85+ study). This collaboration will maximise the use of data and increase understanding of international comparisons. Dissemination of results will be in a wide field due to on-going analysis in the fields of musculoskeletal medicine, nutrition, frailty, disability, polypharmacy, participation and loneliness.
To date the study output dissemination strategy has been wide and includes the general public, academic researchers and those working in the NHS. Future dissemination will be undertaken in both the research and wider community to target older people and health and social care professionals. The study team will continue to involve the established public engagement group VOICE (Valuing Our Intellectual Capital Experience - https://www.voice-global.org/ ) and the lay representative on the study steering committee to help develop a dissemination strategy for a lay audience. Participant feedback will consist of an individual newsletter to all participants outlining the major findings of the study and the study team will highlight the work through newsletters and meetings in the voluntary sector. The study team has a track record of publishing in high quality peer reviewed journals and aims to publish in journals in the fields of ageing and primary care; subject-specific journals will be used where appropriate. The study team will identify those high ranking journals where their work will be of interest to the audience and have the most impact. Previously this has included the British Medical Journal (BMJ), Lancet, Age and Ageing, International Journal of Gerontology, Journal of the American Geriatrics Society, amongst others, and they will continue to target such journals. The study team will present at the major conferences in the field of primary care (Society of Academic Primary Care) and care of older people (British Geriatrics Society, International Association of Gerontology and Geriatrics) in order to disseminate the results to a wide audience. The study findings will be relevant to commissioners and policy makers who shape the future health and social care services for the very old and the study team will continue to aim to present to this audience.
Benefits reported
Over 60 original articles have been published from the Newcastle 85+ study in peer reviewed journals, covering a wide range of health and social care issues in, a full list is available on the website - https://research.ncl.ac.uk/85plus/
Results have also been disseminated at public events and national and international conferences, where symposia have been held based on the study.
Members of the team have used results from the study to contribute to policy:-
House of Lords Select Committee on Demography 'Ready for Ageing' (2012)
Dilnot Commission on UK care provision (2011). Findings from the Newcastle 85+ Study on levels of capability and dependency provided important data to inform the Commission's work. (Jagger C, Collerton JC, Davies K, et al. Capability and dependency in the Newcastle 85+ cohort study. Projections of future care needs. BMC Geriatrics 2011; 11.)
Swedish Social Council review on healthy ageing Government review 2010)
Why We Age – (2010) A road map for future research in ageing in Europe was generated. This is now under active dissemination (e.g. FUTUREAGE and WHYWEAGE European conference Brussels December 2010).
Social Care Green Paper – Government review (2009). Invited to give oral evidence on drivers of healthy life expectancy in the UK and the impact on long term care to the Health Committee in connection with the Green Paper on Social Care funding reforms.
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds, the earliest of which is July 2021.
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July 2021 —
already listed in the earliest edition this site holds, so it may be older. 2 versions: DARS-NIC-148471-FR43L-v2.3, DARS-NIC-148471-FR43L-v3.2
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December 2023
Renamed Applicant organisation: Newcastle University now named University of Newcastle upon Tyne. Not counted as a change.Renamed Data controllers: Newcastle University now named University of Newcastle upon Tyne. Not counted as a change.
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January 2024
1 version added: DARS-NIC-148471-FR43L-v4.11
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-148471-FR43L, “MR1032 - The NEWCASTLE 85+ STUDY: BIOLOGICAL, CLINICAL & PSYCHOLOGICAL FACTORS ASSOCIATED WITH HEALTHY AGEING”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-148471-fr43l/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-148471-FR43L to see the original rows.