Improving the experience of dementia and enhancing active life: living well with dementia - the IDEAL study (Data linkage extension)

London School of Economics and Political Science (LSE) · Academic

In term In term in the September 2026 edition: the latest version runs to 27 August 2027.

Reference: DARS-NIC-29822-N0N7W
Current version: v3.2
Term of current version: 22 June 2026 to 27 August 2027
Start date: 28 August 2022
Data controller: Sole Data Controller
Commercial purposes: No
Sublicensing: No
Files released to date: 323

Why the data was released

Objective for processing

BACKGROUND:

The 'Improving the experience of Dementia and Enhancing Active Life' (IDEAL) programme is led by the Centre for Research in Ageing and Cognitive Health (REACH) at the University of Exeter. The project website can be found here: http://www.idealproject.org.uk/about/ideal/. This Data Sharing Agreement relates to the ‘Improving the experience of Dementia and Enhancing Active Life (IDEAL): Living Well with Dementia (Data Linkage Extension)’, which represents an arm of the wider IDEAL programme and is led by the Care Policy and Evaluation Centre (CPEC) at the London School of Economics and Political Science (LSE).

The following paragraph is a description of the wider IDEAL programme:

Living well with dementia, whether as a person with dementia or primary (usually family) carer, can be understood as maximising life satisfaction, reaching one's potential for well-being, and experiencing the best possible quality of life. This programme aims to understand what 'living well' means from the perspective of people with dementia and their carers. It hopes to identify what helps people to live well or makes it difficult to live well in the context of having dementia or caring for a person with dementia. To understand what 'living well' means to people with dementia and primary carers, the research team hope to explore how people adapt to the challenges that the condition presents over time. The research aims to explore factors important to adapting to dementia, such as the assets, resources and support networks people have available. The methods for questionnaire data collection and analysis are described in detail in the published protocol, available here - http://www.hqlo.com/content/12/1/164. A full description of the study’s data collection method, PDFs of all questionnaires and data dictionaries are available here - https://reshare.ukdataservice.ac.uk/854293/. The data dictionaries link is: https://reshare.ukdataservice.ac.uk/854293/3/854293_Data_documents.zip.

IDEAL Cohort Study Research questions

1. How do capitals, assets and resources, and adaptation in response to dementia-related and other challenges influence the ability to live well for people with dementia and carers, and what are the reciprocal influences between people with dementia and carers factors?

2. How do changes over time in capitals, assets and resources, dementia-related and other challenges, and adaptation affect evaluations of living well for people with dementia and carers?

3. What do people with dementia and carers believe helps or hinders the possibility of living well, and what factors are particularly important to them in terms of being able to live well with dementia?

COHORT

The IDEAL programme team carried out a two-year longitudinal cohort questionnaire study of 1545 people with dementia and 1285 carers living in the community in England, Wales and Scotland between 2014 and 2019. Interviewing of the IDEAL cohort began in March 2014 and ended in July 2018. Of the participants with dementia, 1183 were recruited of which 812 members of this cohort are English. It is for this subset of the cohort for which NHS England data is required.

The data collected in the study’s questionnaires have some limitations. While primary carers were asked to give information on service use by the participant with dementia, not all participants with dementia had a carer. In the latter case, the person with dementia was asked directly for the information. People with dementia may have difficulty recalling the services they used without a carer to help them. Also, because people find it more difficult to remember what services they have used in the more distant past, participants/carers were asked only to recall services used in the prior three months. As only three three-month snapshots of services were collected, there will be gaps in the information available for analysis. The questionnaire data are necessarily limited to the two-year duration of the study.

Participants (patients with dementia only) were recruited from NHS memory services and specialist clinics in Great Britain, and also from the Join Dementia Research portal. IDEAL researchers visited participants and asked them about factors that influenced their life satisfaction, well-being and quality of life at Time 1 (T1 includes consent as well as baseline data entry at 6 months, 12 months, 18 months).

IDEAL researchers revisited all participants on two more occasions, one year apart (Time 2 (T2); qualitative piloting, data collection, data entry and qualitative interviews and Time 3 (T3); data collection, data entry and qualitative interviews) to find out how things developed or changed over time and how any changes affected their life satisfaction, well-being and quality of life.

Participants with dementia (for some, the carers responded on the participants behalf) were asked to provide informed consent (where the participant lacked capacity to consent, personal consultees provided consent on behalf of the participant) to complete the study questionnaires at the baseline interview (T1) and subsequently were asked to provide consent to complete the study questionnaires at T2 and T3. At the second time point, researchers also requested consent from participants for linkage of questionnaire to health service and mortality datasets.

Data is required against those who consented (or were recruited under consultee consent) under the ‘Time 2’ data linkage consent.

AIM & PURPOSE

CPEC-LSE requires Hospital Episode Statistics (HES), Civil Registration (Deaths) and Mental Health data for use in the IDEAL study. The proposed project under this agreement, an economic analysis, would link the administrative health and mortality data to the IDEAL cohort questionnaire data supplied to CPEC-LSE by the University of Exeter.

The current evidence base on use and costs of healthcare by people with dementia in the UK is sparse - for instance, studies have been based on small sample sizes and unconfirmed dementia diagnoses. The IDEAL survey data will enhance the evidence base on the economics of dementia; however there are limitations to the information that can be collected by self-report methods (e.g. discontinuous “snap-shot” data limited to the study period, drop-out). The data linkage component of the study hopes to provide important information on health service trajectories in this under-represented population.

The aims of the proposed economic analysis are:

• Compile statistics to describe trends on health services received by English participants with dementia, covering a continuous proposed period of 5 years prior to study entry and thenceforth to the end of the study’s two-year follow-up

• Calculate indicative health service costs for this population 5 years prior to study entry and over the two years of the study

• Carry out a longitudinal analysis of use of health care services and mortality for this population, examining trajectories of service costs and the relationship of those costs with living well outcomes.

The planned economic analysis of the IDEAL Questionnaire data examines the following questions:

1. What health and social care services are used by the person with dementia?

2. What are the costs to health and social care of supporting the person with dementia?

3. What are the costs to the person with dementia and the carer of supporting the person with dementia (e.g. out-of-pocket spend, lost income)?

4. Are health and social care services impacting on the ability of the person with dementia to live well and on the ability of the primary carer to cope with caring responsibilities?

5. What is the relative impact of different services on the ability of the person with dementia to live well, compared to the impact of dementia-related challenges and the inherent characteristics of the person with dementia and primary carer?

6. How does the ability of the person with dementia to live well change with different levels and combinations of services?

7. How does adaptation impact upon the relationship between service use and the ability of the person with dementia to live well over time?

The data may help to achieve the aim identified in the ‘Aim and Purpose’ section above by serving as the basis for:

• describing the cohort’s use of hospital and mental health services and associated costs over the study period and 5 years prior

• using modelling to examine trajectories of hospital and mental health service costs over the study period and 5 years prior

• using modelling to examine the relationship of hospital and mental health service costs with living well outcomes.

The economic analysis proposed in this agreement would use administrative data on health service utilisation for all English participants who have consented to data linkage. Linkage of the administrative and questionnaire datasets may improve the quantity and quality of data available for longitudinal analysis of use of health care services and mortality in the sample in the following ways:

• The research may have better temporal coverage than relying on the 3 snapshots of service available from the questionnaire data. This confers the benefit of improved tracking of rarer service use events such as hospital stays.

• The study may be able to collect data on the mortality of participants when other sources of information on loss to follow-up due to death are unavailable.

• Linkage could allow the examination of patterns of service use in terms of demographic characteristics such as stage and severity of dementia and dependence, which are not available in the administrative datasets.

Hospital Episode Statistics, Civil Registration (Deaths) and Mental Health data are required to describe the hospital and mental health services that participants with dementia used during the study and also before the study began. The data should be as comprehensive as is feasible to allow the lead IDEAL researcher at LSE to:

• Compile statistics to describe trends on health services received by people with dementia, covering a continuous proposed period of 5 years prior to study entry and thenceforth to the end of the study follow-up (2009-2018). The 5-year period prior to study entry encompasses a period over which prodromal change in the cognitive health of the sample may be expected and might be associated with higher use of health services. Statistics include: annual number of care contacts with mental health practitioners, numbers of general and mental health hospital admissions, numbers of outpatient clinic visits and numbers of deaths.

• Calculate indicative health service costs for this population over the proposed period.

• Construct summary variables of resource use and cost for use in longitudinal multivariate analyses

• Carry out a longitudinal analysis of use of health care services and mortality for an English sample of people with dementia, in the 5 years prior to the date of the baseline assessment, and then over the two intervening years from baseline to the last follow-up/time 3 assessment; and to examine trajectories of use with long-term living well outcomes.

The LSE researcher hopes to match unit cost information/price weights to indicators of acute hospital service receipt obtained from the data linkage, using the National Schedule of NHS costs (NHS Reference costs - https://improvement.nhs.uk/resources/national-cost-collection/. This should entail merging look-up tables of unit costs (aggregated, non-sensitive data) with the secondary care routine data, and attaching unit costs to the services used via statistical software code. The researcher hopes to produce derived variables for costs to use in the analysis.

ORGANISATIONS INVOLVED

LSE is the controller as the organisation responsible for ensuring that the data will only be progressed for the purpose described above. The IDEAL researchers at the LSE will conduct the analyses of service use and costs data.

The University of Exeter are involved insofar as they supply LSE with the IDEAL cohort data (University of Exeter are the Data Controller for the IDEAL cohort data). An Academic Collaboration Agreement in place with CPEC-LSE agreeing to supply CPEC-LSE with the IDEAL cohort data. The University of Exeter have no responsibility in determining the means and purposes of the processing of NHS England data, nor will they have access to or process the NHS England data. They are therefore not a Controller or Processor for the purposes of this Agreement.

A letter clarifying the roles of the University of Exeter and LSE in relation to data controllership and data processing has also been supplied to NHS England. The letter is signed by the Director of the Care Policy and Evaluation Centre at LSE and the Director of the Institute of Health Research at University of Exeter and has been reviewed and approved by the Data Access Request Service at NHS England.

Organisations that are involved in the wider project (but not processing NHS England data):

• The Centre for Research in Ageing and Cognitive Health (REACH) at the University of Exeter: lead centre for the IDEAL programme.

• Brunel University

• Cardiff University

• Innovations in Dementia Community Interest Company

• Kings College London

• RICE (Research Institute for the Care of Older People)

• University of Sussex

• University of New South Wales

• NWORTH (North Wales Organisation for Randomised Trials in Health) Bangor Trials Unit

• Newcastle University

• University of Bradford

• Betsi Cadwaladr University Health Board

The following organisations are partners in the IDEAL programme. They are not involved directly in the data linkage study:

• Brunel University

• Cardiff University

• Innovations in Dementia Community Interest Company

• Kings College London

• RICE (Research Institute for the Care of Older People)

• University of Sussex

• University of New South Wales

• NWORTH (North Wales Organisation for Randomised Trials in Health) Bangor Trials Unit

• Newcastle University

IDEAL questionnaire data were entered and checked by NWORTH CTU (North Wales Organisation for Randomised Trials in Health Clinical Trials Unit) at Bangor University. NWORTH CTU is responsible for the preparation of the questionnaire dataset for depositing to the UK Data Archive (https://www.data-archive.ac.uk/) on completion of the IDEAL study. However, NWORTH at Bangor University has no role in relation to the data under this Agreement.

LEGAL BASIS FOR PROCESSING 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 proposed economic analysis hopes to examine the relationship between living well outcomes of people with dementia and their carers and patterns of paid and unpaid care, demographic and needs-related characteristics and other factors. As previously described, data linkage hopes to improve the quality and validity of the data available for analysis, serving to enhance the generalizability of the findings. The research may provide policy makers, commissioners, providers of health services and social care services, and people with dementia and their carers with: evidence of the patterns of service use and costs in a large sample of people with dementia; evidence of variations in costs related to socio-demographic and psychological characteristics; and evidence of the impact services (individual or combined) have on well-being outcomes. The existing UK evidence base on costs of care for people with dementia is currently limited. This information can be used for the purposes of planning better-targeted and more efficient services.

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 use of the administrative and questionnaire data is in proportion to the aims of the research as described above.

FUNDING

The first phase of the IDEAL study was funded by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2 ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia’, from 2014 –2019.

The second phase, the IDEAL 2 study, is funded by the Alzheimer’s Society from 2018 –2022. This agreement is to link data collected during the IDEAL study, but the funding to permit the analysis of the data has been made available from IDEAL 2.

None of the above-named funders will have access to NHS England data disseminated under this agreement.

PATIENT AND PUBLIC INVOLVEMENT

At the stage of developing the consent forms and participant information sheets, the IDEAL study team consulted with the ALWAYS group (the study’s Public and Patient Involvement group, all members of which have been diagnosed with dementia and have carers) and revised the forms in line with their suggestions. The ALWAYS Group does not have access to or process NHS England data, nor will the group determine the aims or objectives of the project. Further information on the ALWAYS group is available here - http://www.idealproject.org.uk/takingpart/involvement/. When the results of the analyses of the linked data are available, they will be shared with the ALWAYS group to ensure that the communication of results is accessible and relevant and to focus recommendations for policy and research so that they reflect the priorities of people with dementia and their carers.

Processing activities

DATA FLOW:

1) University of Exeter (data controller of the IDEAL study questionnaire data) will securely transfer a file of identifiers (Study ID, NHS Number, Date of Birth, Surname, Forename, Gender and Postcode) to NHS England.

2) NHS England will identify corresponding records in the HES, Mental Health and Civil Registration (Deaths) data, using NHS Number, Date of Birth, Surname, Forename, Gender and Postcode for the years requested.

3) NHS England will generate a file of HES/Mental Health/Civil Registration (Deaths) data and the IDEAL Study ID.

4) NHS England will flow the linked, pseudonymised data to LSE.

5) LSE will store the data on a password-protected secure folder on its servers at LSE in London.

6) LSE will provide secure access to the data to the lead researcher at LSE.

7) The LSE lead researcher will link the records in the HES/Mental health/Civil Registration data files provided by NHS England to the corresponding records in the IDEAL Questionnaire dataset provided to them by the University of Exeter (henceforth the ‘linked dataset’) using the IDEAL Study ID.

Only the data of participants with dementia in England with documented consent or consent under consultee advice to data linkage will be submitted for linkage (812 participants).

The linked dataset will be used only for the purpose outlined under this agreement. Only the lead researcher employed by the LSE will have access to the full set of administrative data. No data received from NHS England will be transferred from the LSE to any other organisation.

The IDEAL team at University of Exeter stores the IDEAL participant identifiable information in a separate location to the participant questionnaire data. The database is only accessible to a limited number of research staff at the University of Exeter. All staff who access the database have completed the University’s data protection training. University of Exeter will not have access to the linked IDEAL cohort and NHS England data.

Recruitment to the IDEAL questionnaire study (excluding the piloting phase) began in July 2014. Baseline questionnaire recruitment proceeded until August 2016; re-contacting participants to seek consent to participate at subsequent follow-up timepoints started the same time one year later. Data linkage consent was sought at T2, the first follow-up point (starting between July 2015 and August 2017). People who dropped out after baseline (T1) would not have been asked for Data linkage consent (and so would not be included in the list of participants with data to be linked).

1183 People with dementia in England, Scotland and Wales were consented to take part in IDEAL questionnaire study. Of these, 1183 were recruited (of which 812 were recruited in England) and gave consent for data linkage.

LSE require data on the 812 (English) pariticpants. Of these, 124 had Consultee consent and 688 gave consent on their own behalf.

There is detailed supporting documentation for the IDEAL programme, available on the UKDA site - https://reshare.ukdataservice.ac.uk/854293/. The consent forms for data linkage, including the consultee form, are in a file available here - https://reshare.ukdataservice.ac.uk/854293/6/854293_Supporting_documents.zip.

Data security:

The LSE will have responsibility for applying sanctions in the event of a data breach. The LSE has in place a data assurance plan for the secure storage and processing of NHS England data at LSE, and storage and processing for data under this Agreement will follow the same security arrangements. LSE has a strong commitment to information security, over and above what is laid out in this process for the safeguarding of data. LSE has senior level sponsorship of its information security policies and processes. Its top level Information Security Policy and its suite of information security policies has been approved by the LSE’s Information Technology Committee (ITC), which consists of Departmental Managers, Heads of Department and executive representatives from across the business. LSE has a wealth of experience conducting research using highly sensitive data that has been supplied by local and national governments, national and international agencies, police forces, other universities and other key providers. The researcher’s workstation is aligned to a central server, updated within a week of critical security patches being released, with updates pushed out through the Windows Server Update Services (WSUS) on a daily basis. All campus workstations run tamper-proof antivirus software, which is managed and updated centrally. End users and system administrators cannot disable antivirus software. All campus workstations are subject to Internet content filtering and application blocking policies. LSE servers and storage run anti-virus by default.

NHS England data will not be made available to any third parties other than those specified except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide.

There will be no requirement nor attempt to re-identify individuals from the data.

Amazon Web Services provide Cloud Services for LSE and are therefore listed as a processor. They supply support to the system, but do not access data. Therefore, any access to the data held under this agreement would be considered a breach of the agreement. This includes granting of access to the database[s] containing the data.

Expected output

The aim is to:

- publish a paper summarising the analyses of the health services and mortality data in 2023 in peer-reviewed publications such as the British Medical Journal; also chapters and policy papers, team working and discussion papers.

- present findings at one or more national and international conferences (Alzheimer’s Association International Conference July 2023; Alzheimer Europe October 2023; British Society of Gerontology 2023).

Publication outputs hope to present summary statistics (i.e. means, standard deviations, counts (but not of small numbers), percentages (but not of small numbers), and regression analyses estimates.

The analyses may contribute to the creation of an action plan setting out what could be done by individuals, communities, health and social care practitioners, care providers and policy-makers to improve the likelihood of living well with dementia. It is hoped that understanding patterns of health service use and costs in this population may provide much-needed information on where gaps exist and for whom.

The research team expect to have a broad impact on a wide range of academic disciplines through knowledge-exchange events. To do this the researchers hope to build upon existing academic and clinical research networks (e.g. The Dementias & Neurodegenerative Diseases Research Network, NISCHR CRC (Wales), Scottish Dementia Clinical Research Network). These outputs are expected to take place from 2023 onwards.

Further academic paper(s) may be published in open-access, high impact, peer-reviewed journals on methodology; multilevel analyses of hospital service use including acute inpatient admissions and lengths of stay.

The findings are hoped to be published on the IDEAL project website (http://www.idealproject.org.uk/about/ideal/). The IDEAL researchers hope to provide links to open access papers and provide lay summary information of the publications and findings.

Expected measurable benefits

The findings, including those about using health and social care services may be used to create an action plan setting out what can be done by individuals, communities, health and social care practitioners, care providers and policy-makers to improve the likelihood of living well with dementia.

The IDEAL team hope to:

- work with policy-makers to ensure the information the IDEAL researchers have produced could influence future policies.

- work with commissioners and providers of health services and social care services, and with practitioners in these areas, using the evidence the researchers have gained to improve the effectiveness of services.

- engage with the public to encourage a more constructive attitude towards dementia and make local communities more aware and dementia friendly.

The data may reflect the involvement of participants with dementia without a participating carer on hand, a seldom heard-from group whose needs and characteristics are under-researched. In addition, the data is hoped to be more robust in terms of understanding loss to the sample because the linked data may make it possible to track the mortality of participants when other sources of information on dropout due to death are unavailable.

The data linkage element of the study may improve data quality and validity, serving to enhance generalizability of the findings on service use and costs. There is a slim evidence base on service use by people with dementia in the UK. Typically studies have had small samples, or covered just one or two geographical regions, or involved populations with only one diagnosis of dementia (usually Alzheimer’s Disease) or with unconfirmed diagnoses. This means providers and practitioners have had little information to work from when planning how to meet the needs of people with dementia and their relatives. This research hopes to examine whether there are patterns of health service costs that vary in terms of, for instance, dementia sub-type; also, the research hopes to examine whether there are distinct trajectories of cost depending on different health profiles. The information from this research may be used to devise new interventions and to target existing local services more effectively.

IDEAL study impacts:

The researchers expect the IDEAL study to have a major impact on the lives and experiences of people with dementia and primary carers in the UK and internationally. The researchers expect the study to have a significant impact in three key areas:

First, the study may provide robust and high quality research evidence on what factors affect the capacity of people with dementia and primary carers to live well with dementia and could identify factors that are amenable to effective intervention in the short, medium and long term. The study may also have a significant impact on dementia research nationally and internationally by advancing methods in the area.

Second, the researchers hope to work closely with practitioners in health and social care so that the study makes a significant contribution to translating the improved knowledge and understanding of ways of addressing the capacity of people with dementia and primary carers to live well into effective health and social care practice.

Third, the research may provide insights and evidence to support the development of dementia-friendly communities. Focusing on the lived experience of dementia and the daily lives, social relations and physical and social environments of people with dementia and primary carers may allow the researchers to examine:

1) How everyday social interactions in a range of areas facilitate or present barriers to living well;

2) Ways in which public perceptions of dementia can be improved.

Throughout the study, the IDEAL researchers hope to utilise a range of impact pathways involving engagement with the public, practitioners, service providers and policy-makers. These include creating a prominent internet and social media presence (e.g. http://www.idealproject.org.uk, @IDEALStudyTweet), developing printed and online materials, contributing to training courses and programmes, conducting regional workshops linked to local research networks, presenting at events and conferences, and contributing articles to practitioner and academic journals.

The IDEAL researchers hope to hold a consensus meeting with the aim of synthesising the research findings to form an action plan identifying what individuals, practitioners, service providers, and policy-makers can do to enhance the potential for living well with dementia. This may be presented at an end-of-study conference the IDEAL researchers organise for practitioners, providers and organisations working in the field, in order to stimulate collaborative working with key stakeholders to address the aims of the action plan.

Through these activities, the researchers aim to have a significant impact by influencing public perceptions of dementia, enhancing the work of practitioners in health and social care, encouraging the development of new approaches and interventions, contributing to the development of cost-effective service provision, and improving policy.

Benefits reported so far

LSE has revised previously calculated utilisation and cost variables in light of extensive checks. Service utilisation and costs have been calculated in terms of general and mental health hospital admissions, outpatient visits, A&E attendances, and mental health services. The use and cost variables have been calculated on both a yearly and half-yearly basis. IDEAL dataset variables covering the participants’ demographic characteristics, health, functioning and wellbeing have been linked to the use and costs data. Longitudinal analyses examining relationships of service use and costs to participant characteristics and outcomes are in progress. Further time will be needed for LSE to respond to peer reviews of submitted manuscripts reporting the results of the analyses.

Datasets on the current version

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

Datasets approved under DARS-NIC-29822-N0N7W-v3.2
Dataset	Type of data	Sensitivity	Frequency	Confidential data
Bridge file: Hospital Episode Statistics to Mental Health Minimum Data Set	Anonymised - ICO Code Compliant	Non-Sensitive	One-Off	Consent (Reasonable Expectation)
Civil Registrations of Death	Anonymised - ICO Code Compliant	Sensitive	One-Off	Consent (Reasonable Expectation)
Hospital Episode Statistics Accident and Emergency (HES A and E)	Anonymised - ICO Code Compliant	Non-Sensitive	One-Off	Consent (Reasonable Expectation)
Hospital Episode Statistics Admitted Patient Care (HES APC)	Anonymised - ICO Code Compliant	Non-Sensitive	One-Off	Consent (Reasonable Expectation)
Hospital Episode Statistics Outpatients (HES OP)	Anonymised - ICO Code Compliant	Non-Sensitive	One-Off	Consent (Reasonable Expectation)
Mental Health and Learning Disabilities Data Set (MHLDDS)	Anonymised - ICO Code Compliant	Sensitive	One-Off	Consent (Reasonable Expectation)
Mental Health Minimum Data Set (MHMDS)	Anonymised - ICO Code Compliant	Sensitive	One-Off	Consent (Reasonable Expectation)
Mental Health Services Data Set (MHSDS)	Anonymised - ICO Code Compliant	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.

Patient opt-outs were applied to 96 of the 323 files released under this agreement, across every version. About opt-outs

No files recorded as released under the current version. 323 were released under earlier versions, shown in the version history.

Version history

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

DARS-NIC-29822-N0N7W-v3.2 22 June 2026 to 27 August 2027

Title: Improving the experience of dementia and enhancing active life: living well with dementia - the IDEAL study (Data linkage extension)
Commercial: No
Sublicensing: No
Datasets: 8
Files released: 0

Datasets: Bridge file: Hospital Episode Statistics to Mental Health Minimum Data Set; Civil Registrations of Death; Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Outpatients (HES OP); Mental Health and Learning Disabilities Data Set (MHLDDS); Mental Health Minimum Data Set (MHMDS); Mental Health Services Data Set (MHSDS)

What changed from DARS-NIC-29822-N0N7W-v2.2

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

Fields changed from DARS-NIC-29822-N0N7W-v2.2
Field	Was	Became
Start date	~~2025-05-21~~	2026-06-22
End date	~~2026-08-27~~	2027-08-27

Processing activities

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). [20 paragraphs unchanged]

Benefits reported

LSE has processed the HES and mental health services data to calculate indicative health service costs for the cohort and produced initial descriptive statistics on the cohort’s service use and costs to describe trends on health services received by English participants with dementia, covering a continuous period of 5 years prior to study entry and thenceforth to the end of the study’s two-year follow-up. LSE has revised previously calculated utilisation and cost variables in light of extensive checks. Service utilisation and costs have been calculated in terms of general and mental health hospital admissions, outpatient visits, A&E attendances, and mental health services. The use and cost variables have been calculated on both a yearly and half-yearly basis. IDEAL dataset variables covering the participants’ demographic characteristics, health, functioning and wellbeing have been linked to the use and costs data. Longitudinal analyses examining relationships of service use and costs to participant characteristics and outcomes are in progress. Further time will be needed for LSE to respond to peer reviews of submitted manuscripts reporting the results of the analyses. LSE will next conduct longitudinal analyses of health care services use and costs as described in the DSA. Further time is needed for LSE to respond to peer reviews of submitted manuscripts reporting the results of the analyses.

Unchanged: Objective for processing, Expected output, Expected measurable benefits.

DARS-NIC-29822-N0N7W-v2.2 21 May 2025 to 27 August 2026

Title: Improving the experience of dementia and enhancing active life: living well with dementia - the IDEAL study (Data linkage extension)
Commercial: No
Sublicensing: No
Datasets: 8
Files released: 0

What changed from DARS-NIC-29822-N0N7W-v1.3

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

Fields changed from DARS-NIC-29822-N0N7W-v1.3
Field	Was	Became
Start date	~~2023-05-19~~	2025-05-21
End date	~~2025-08-27~~	2026-08-27

Benefits reported

Not stated in the previous version; added here.

LSE will next conduct longitudinal analyses of health care services use and costs as described in the DSA. Further time is needed for LSE to respond to peer reviews of submitted manuscripts reporting the results of the analyses.

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