Improving physical health care in older people in mental health settings: The ImPreSs-Care Quantitative Study

The University of Leicester requires access to NHS England data for the purpose of the following research project: Improving physical health care in older people in mental health settings - The ImPreSs-Care Quantitative Study.

The following is a summary of the aims of the research project provided by the University of Leicester:

Primary objective:

1. To determine the number and type of comorbidities experienced by older people receiving mental health care, and compare this to those not receiving mental health care.

Secondary objectives:

1. To determine the relationship between physical health comorbidities and outcomes in older people receiving mental health care.

2. To integrate data from a qualitative research project to determine recommendations for intervention and care delivery that can be tested in a future study

3. To identify areas for care optimisation, and targeted intervention to improve system processes and outcomes for patients.

The following NHS England Data will be accessed:

• Hospital Episode Statistics (HES) Admitted Patient Care (APC) – necessary to determine admission rates and reasons, physical health comorbidities and to compare this to patients not receiving mental health care.

• Mental Health Services Data Set (MHSDS) – necessary to determine the population of interest, mental health diagnoses/presentation, admissions to the mental health trust.

• Civil Registrations of Death Secondary Care Cut Data – necessary to determine the relationship between physical health comorbidities and frailty with risk of mortality.

• National Diabetes Audit (NDA) – necessary to determine diagnosis of diabetes as a physical health comorbidity and calculate the Hospital Frailty Risk Score (HFRS).

• Community Services Dataset (CSDS) – to determine comorbidities not routinely found in other datasets to calculate the HFRS (e.g. hearing and vision impairment), and to improve comorbidity coverage.

The level of the Data will be pseudonymised.

Several sensitive fields are required from the NDA as these are needed to determine physical and mental health comorbidities, to determine the comorbidity and/or frailty risk score, or adjust in statistical models. These fields will also enable the understanding whether the physical health comorbidity pre-dated the mental illness diagnosis or not.

Date of Death is required to calculate the 30-day mortality and survival post-discharge outcome. Underlying cause of death is required to analyse and understand the main physical health causes of death in this population.

The Data will be minimised as follows:

Limited to a study cohort identified by NHS England for individuals during the period from 1/4/2018 to 31/3/2023 who were aged 65+ years at the point of receiving HES APC care during that period.

The University of Leicester is the research sponsor and the controller as the organisation responsible for ensuring that the Data will only be processed for the purpose described above.

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

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

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

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

This processing is in the public interest because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.

The funding is provided by Van Geest Foundation Heart and Cardiovascular Diseases Research Fund and the Dunhill Medical trust. The funding is specifically for the study described.

The funder(s) will have no ability to suppress or otherwise limit the publication of findings.

Data will be accessed by:

• Individuals substantively employed with the University of Leicester.,

• Individuals with an honorary contract with the University of Leicester. – this is restricted to:

o A researcher substantively employed by London School of Economics (LSE) who will undertake analysis of the data and provide statistical expertise with data handling and analysis.

o A researcher substantively employed by the University of Barcelona (Spain) who will undertake analysis of the data and provide statistical expertise with data handling and analysis.

o A research assistant substantively employed by Age UK who will support the data analysis.

• Individuals holding an honorary contract under the supervision of a substantive employee of University of Leicester for the purposes described in this DSA only. University of Leicester must maintain records in a single location that cover the following details of each individual given access under an honorary contract:

o Their substantive employer;

o Their role in respect of the purpose for the processing specified in the DSA;

o The start date and end date of the duration in which the Data will be accessed by the individual under an honorary contract;

o The necessity for the Data to be accessed by the person(s) holding an honorary contract, instead of a substantive employee of an organisation named as controller or a processor in this DSA;

o Confirmation that an appropriate contract is in place which follows the relevant guidance and is countersigned by the substantive employer of the honorary contract holder.

A Public and Patient Information and Engagement group was consulted regarding the collection of the data for the purposes described above. The University of Leicester have consulted with patients and carers of people affected by combined physical and mental health problems who thought this project was worthwhile, beneficial and did not object to the use of pseudonymised data for this research purpose given the potential benefits to patients. The University of Leicester have a lay research team member who will be involved throughout the lifetime of the research project and will provide a patient carer perspective on the research conduct, interpretation, findings and dissemination.

The University of Leicester conduct regular, 6 monthly PPIE meetings for this project as part of the funding. PPIE members did not have any concerns about the data being used or the proposed processing and were supportive of the project to use the data to enhance knowledge in this area.

No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA).

NHS England data will provide the relevant records from the MHSDS, HES APC, Civil Registration Death Secondary Care Cut Data, CSDS and NDA datasets to University of Leicester.

The Data will contain no direct identifying data items. The data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient.

The Data will be stored on servers at University of Leicester.

The Data will be backed-up on the Research drive (R:) on the University of Leicester server.

The Data will be accessed by authorised personnel via remote access.

The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

For Remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

- Multifactor authentication (MFA) is required for remote access;

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

Remote processing will be from secure locations within the EEA. The data will not leave the EEA at any time.

Data will be accessed by individuals with an honorary contract with University of Leicester. The individual(s) will act as an agent of London School of Economics, University of Barcelona and Age UK at all times under supervision from employees of University of Leicester. Aside from this/these individuals, access is restricted to employees or agents of University of Leicester who have authorisation from the Principal Investigator.

The University of Loughborough will access analysed/aggregated data with small numbers suppressed to develop a discrete event simulation to model processes and pathways to improve service provision. The University of Loughborough will only access aggregated data (not raw data) with small number suppression rules applied for the purpose of modelling new care pathways and developing service recommendations derived from the integration of the analysed data with qualitative data collected separately.

The University of Nottingham will be collaborating with the University of Leicester in the interpretation of the findings, developing recommendations and write-up. The University of Nottingham will only access aggregated data (not raw data) with small numbers suppressed for the purpose of modelling new care pathways and developing service recommendations derived from the integration of the analysed data with qualitative data collected separately.

The aggregated data, anonymised with small numbers suppressed, will be combined with a qualitative data from a linked research project at the University of Leicester. The University of Leicester will collect qualitative data from a related research project and integrate the aggregated qualitative data with findings from this project with mixed methods. This will allow the University of Leicester to draw recommendations for future service development and design that will be reviewed by focus groups involving key stakeholders.

All personnel accessing the data have been appropriately trained in data protection and confidentiality.

There will be no requirement and no attempt to reidentify individuals when using the data.

Analysts/researchers from the University of Leicester will process/analyse the data for the purposes described above.

The expected outputs of the processing will be:

• A report of findings to the van Geest Cardiovascular Foundation Heart and Cardiovascular Diseases Research Fund on an annual basis

• Submissions to peer reviewed journals within one-two years of completing data analyses.

• Presentations to local clinical and research departments at the University of Leicester and affiliated hospitals.

• Presentations at appropriate conferences relevant to geriatrics, mental health, cardiovascular disease.

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

• Academic/scientific conferences

• Social media

• Community presentations to community groups and organisations

• Lay summaries to participants involved in the focus group and qualitative interview study

The target dates for production and dissemination of the outputs are expected within 1-2 years of analysing the data (January 2026).

The findings of this research study are expected to contribute to evidence-based decision-making for policy-makers, local decision-makers such as doctors, and patients to inform best practice to improve the care, treatment and experience of health care users relevant to the subject matter of the study.

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 frailty and mental health.

• inform planning health services and programmes, for example to improve equity of access, experience and outcomes.

• inform decisions on how to effectively allocate and evaluate funding according to health needs.

• provide a mechanism for checking the quality of care. This could include identifying areas of good practice to learn from, or areas of poorer practice which need to be addressed.

• support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).

The findings from this study will provide up-to-date information on the level of physical health comorbidity and frailty in older people receiving secondary mental health care in England. The data provided will allow The University of Leicester to determine the relationship of these variables to health outcomes for these patients. This information will be combined with qualitative data to help derive service recommendations to improve physical health care provision and access for patients with complex physical and mental health needs.

It is hoped that through publication of findings in appropriate media, the findings of this research will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to specific patients.

The University of Leicester will engage with service commissioners and managers locally during the qualitative aspect of this project, and findings will be disseminated to these key stakeholders to help disseminate the findings and recommendations to the relevant people and inform service design and delivery in physical and mental health care integration.

The University of Leicester will also engage with third sector organisations such as Age UK and Mind to help improve the reach and dissemination of our study findings. The University of Leicester will share the findings on social medias and via community presentations.

No yielded benefits have been identified so far due to a delay with starting to analyse the data.