Establishing evidence to inform culturally competent mental health services (EVOLVE)

The University of Newcastle Upon Tyne requires access to NHS England data for the purpose of the following research project - Establishing evidence to inform culturally competent mental health services (EVOLVE).

The following is a summary of the aims of the research project provided by University of Newcastle Upon Tyne:

"The aim of this project is to identify and quantify changes in engaging NHS mental health services (both primary and secondary care) for people who are ethnic minorities select areas within North East and North Cumbria (NENC) area, before and after the pandemic and the impact on their health-related outcomes.

A COVID-19 diagnosis has negative effects on mental health. About 1 in 5 positive COVID-19 cases have experienced a mental health problem within 90 days of diagnosis. COVID has also worsened and deepened the longstanding mental health inequalities for ethnic minorities. Research has reported higher levels of anxiety and depression in ethnic minorities across the pandemic, but less available support from mental health services. The COVID-19 Social Study by University College London (UCL) reported higher levels of anxiety and depression and worse mental health in ethnic minorities across the pandemic than in those of white ethnicity. This indicates a pressing need to understand what and how changes in using mental health services impact health outcomes of ethnic minorities, so practice will learn what and how services should be provided to satisfy people’s needs.

This study aims to examine the impact of the pandemic on patterns of engagement with mental health services for adult patients in North East and North Cumbria and determine whether these patterns were associated with health-related outcomes. The North East and North Cumbria was selected as the setting for the study, as there is a high prevalence of mental health referrals and higher percentage of ethnic minorities within the population.

The specific objectives of this study are:

• To investigate service utilisation, such as settings and pathways of care, where people experienced mental health difficulties in the year prior to periods of lockdown.

• To quantify changes in patients mental health service utilisation & patient outcomes between time periods of the COVID19 lockdown in England. This will be used to estimate the associations between mental health service utilisation and patient outcomes

• To compare the impact of changes in mental health in White British and ethnic minorities. Conduct comparative analyses using data from the least deprived areas.

• To quantify the contribution of individual, practical, and geographic factors to variation in mental health service utilisation.

• To explore the contributions of patients, providers, and geographic factors to these associations, establishing when, where and for whom mental health services may be effective."

The following NHS England Data will be accessed:

• Hospital Episode Statistics - Admitted Patient Care & Outpatient

• Emergency Care Data Set (ECDS)

– necessary to provide information on cohort member hospital admissions and associated treatments. This data will be used to assess health outcomes of cohort members that may be as a result or exaggerated because of their mental health. The data will also further add to the information collected on cohort member use of mental health services and the patient’s pathway through care to receiving specialist treatment.

• Community Services Dataset (CSDS) – necessary to provide information on cohort member use of community health services provided through NHS Trusts, health centres, schools, mental health trusts, and local authorities. The key variables from this dataset include personal and demographic information, social and personal circumstances, diagnoses including long-term conditions and disabilities, care events plus screening activities, and scored assessments.

• Mental Health Services Data Set (MHSDS) – necessary to provide information on cohort members contact with any type of secondary mental health services provided and/or funded by NHS England. This includes voluntary and involuntary inpatient treatment, outpatient attendance, community mental healthcare, and other episodes of secondary mental healthcare. The data will be uses to determine the type, clinical characteristics (such as diagnosis, care clusters & Health of the Nation Outcome Scales – a routine clinical outcome measure used by mental health services) and length of service use by cohort members.

• Improving Access to Psychological Therapies (IAPT) v1.5 & v2 – necessary to provide further information on cohort members use of mental health services. This data will provide information on the use of services such as cognitive behavioural therapy, counselling and self-help support through self or GP referral. This information will provide insight into cohort member use of these types of services, including waiting time before treatment, length of treatment, any gaps in treatment spells & patient outcomes.

The level of the Data will be identifiable – necessary to link the data with data collected from other sources. This linkage will be performed by a nominated individual within North of England Commissioning Support Unit. The data will be pseudonymised before processing is conducted for the purpose of the study.

The Data will be limited to a study cohort identified by NHS North of England Commissioning Support Unit. The cohort consists of approximately 11652 individuals who are:

• Adults over 18

• Registered with one of 6 GP practises within the Newcastle upon Tyne, Middlesbrough or Stockton-on-Tees local authority areas. These GP practises are:

- Elswick Family Practice

- West Road Medical Centre

- Elm Tree Surgery

- Riverside Medical Practice

- Park Surgery

- Prospect Surgery.

• Referred or self-referred to mental health services between 23 March 2019 and 22 March 2020.

University of Newcastle Upon Tyne 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 in the public interest or in the exercise of official authority vested in the controller. The results of this study will provide information about potential disparities for those referred to mental health services within different ethnic populations in England & help to highlight the needs of the patient to be met by the care provided in order to improve the health outcomes and reduce these inequalities. University of Newcastle Upon Tyne is a public authority carrying out a research project.

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 National Institute for Health Research (NIHR). The funding is specifically for the study described. Funding is in place for the duration of the study. The funder(s) will have no ability to suppress or otherwise limit the publication of findings.

NHS North of England Commissioning Support Unit is a processor acting under the instructions of University of Newcastle Upon Tyne. NECS have been commissioned to support the study within the areas listed below, utilising capability & expertise the research study team cannot fulfil entirely. NHS North of England Commissioning Support Unit role is limited to:

• Extracting the primary care data from the selected GP practises & processing of confidential data, including submitting this to NHS England for linkage to the datasets requested.

• Linking NHS England datasets to primary care data collected separately.

• Pseudonymisation of the linked data before transferring to University of Newcastle Upon Tyne for study analysis.

• Retention of the pseudonymisation key to be held separately from the research team at University of Newcastle Upon Tyne.

The study has engaged with multiple Public and Patient Involvement and Engagement (PPIE) groups to help refine the purpose of the research. Responses from the groups supported the collection of the data for the purposes described above.

People with lived experience and the Voluntary Community and Social Enterprise (VCSE) sectors, who closely link to their local ethnic minority communities, have been essential in developing the purpose of the study. The study has followed the UK Standards for Public Involvement in research in developing its PPIE strategy.

The study has consulted two PPIE partners, with lived experience or family carer for those with lived experience. These partners were members of the public recruited through Health equality for ethnically minoritised communities (Haref) and Ethnic Health Forum (EHF) charities. These partners provided the study with insight into their different and wide-ranging experiences of coping with and supporting mental health difficulties, helping to determine and measure study outcomes. The study also engaged representatives from the two third sector organisations (Haref & EHF).

PPIE partners were consulted on & advised on the methods, procedures, and analysis proposed within the study. PPIE partners agreed that mental health is an area of unmet needs with exacerbated inequalities due to the pandemic, especially for ethnic minorities, therefore requiring timely research input. All PPIE partners share a passion for improving mental health services/experiences and a commitment to promoting culturally competent services and disseminating study results for potential benefits for service users.

PPIE partners were supportive of the use of routinely collected health data for this purpose and were supportive of the potential benefits sought by the analysis. PPIE partners also commented on the use of routine data without consent and considered this to be appropriate because requesting consent would lead to a biased sample as the response rate would be extremely low in people experiencing mental health problems, who however would benefit the most from this study. In addition, given the expected low response rate, seeking consent from eligible patients would not meet the sample size required by this study.

The study has also expanded its PPIE strategy and are now linked to the Service User and Carer Reference Group for the Cumbria, Northumberland Tyne and Wear (CNTW) NHS Foundation Trust. This group is a service user and carer led forum that works towards continuous improvement of mental health services by utilising the group’s assets and expertise. A group member with little research experience has reviewed the study summary and design and expressed support & interest in being part of the PPIE group.

PPIE partners are consulted regularly with meetings taking place every 6 months. The group has advised on the methods, procedures, and analysis proposed in the study and will continue to advise on and co-deliver dissemination activities, to ensure that the concerns and needs of the public groups are addressed. University of Newcastle Upon Tyne are developing a long term relationship with the partners, with the view they will also support future projects.

NHS North of England Commissioning Support Unit (NECS) will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number, Date of Birth & Name) for the cohort to be linked with NHS England data.

NHS England will provide the relevant records from the HES, ECDS, CSDS, MHSDS & IAPT datasets to NECS. The Data will contain a unique study identifier which is required to link the Data at record level with primary care data already held by the recipient. NECS will also hold identifying details for the purposes of linking the Data.

NECS will link the Data with primary care data collected from GP practices included within the study at record level. NECS will then pseudonymised the linked data using a unique identifier. The pseudonymised & linked Data will then be securely transferred to University of Newcastle Upon Tyne for processing for the purposes of the study analysis.

The identifiable Data will be stored on servers at NECS. The pseudonymised subset of the data will be stored on servers at University of Newcastle Upon Tyne and accessed by University of Newcastle Upon Tyne substantial employees.

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 England. The data will not leave England at any time.

Access to the confidential patient identifiable Data is restricted to substantive employees of NECS. Access to the pseudonymised Data will be restricted to substantive employees of University of Newcastle Upon Tyne who have authorisation from the Chief Investigator. Employees of University of Newcastle Upon Tyne are permitted to access pseudonymised data only.

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 pseudonymised Data. The identifying details will be stored in a separate database held by NECS. All analyses will use the pseudonymised dataset. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset. Researchers from University of Newcastle Upon Tyne will analyse the Data for the purposes described above.

The expected outputs of the processing will be:

• A report of findings to NIHR (July 2024) and 2 further papers published including outcomes of the research (July 2024).

• Presentations to ethnic minority community members and community organisations. The outputs to and with ethnic minorities from two regions will be ongoing throughout the project and findings will be presented at our engaged communities and forums identified by participants as having a strong impact.

Haref (a Newcastle based charity) will help disseminate through presentations (Late 2024) at:

Haref Network meeting – community organisations

- Haref Allies events – health and wellbeing services

- The Community Forum – practitioners working with people with protected characterises

And will share information through

- Newcastle City Council and Gateshead Public Health teams

- Connected Voice bulletins, social media and quarterly magazine

EHF will disseminate through presentations and newsletters (Late 2024) at:

- The National Council for Voluntary Organisations

- Voluntary Sector North West

- Greater Manchester Centre for Voluntary Organisation

- Manchester’s local voluntary & community sector support organisation

- Manchester BME Network

- Manchester City Council Neighbourhood

Dissemination materials and summaries will be made available in multi-languages.

• Presentations at appropriate conferences such as Fuse International conference, Society for Academic Primary Care Annual Conference & School for Primary Care Research Showcase in 2024.

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:

• Social media

• Public reports

• Industry newsletters

• Public events & conferences

• Posters displayed at participant GP practises.

• Participant newsletters

• Reports aimed at participants, the public and study stakeholders.

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 the need for, or effectiveness of, preventative health and care measures for particular populations or conditions associated with mental health.

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

Immediate (Early 2024)

The study may have an immediate impact on the care of patients with mental health problems through increasing awareness of the impacts associated with service changes and factors enabling high-quality services, in both affected individuals and their service providers. This will be both through the conduct of the study and dissemination of findings regionally and nationally using our links via the 15 ARC network. Increased awareness in primary care may lead to proactive identification and improved care for these patients who are at risk.

Researchers anticipate that the overall project including the following literature reviews, stakeholder interviews and surveys will promptly impact the treatment of individuals with mental health issues in North East and North Cumbria (NENC). This impact will be achieved by raising awareness regarding the effects related to service alterations and the factors that facilitate the delivery of high-quality services. This increased awareness will be a result of both conducting the study and disseminating its findings on a regional and national scale. Leveraging our connections through NIHR infrastructure such as the Fuse International conference and SPCR Showcase, as well as collaborating with clinical partners like the NENC ICS Mental Health Workstream, Mental Health Clinical Network, and Greater Manchester Health and Social Care Partnership (HSCP) to amplify the dissemination of outputs.

Enhanced understanding of the factors influencing mental health service provision in primary care settings could lead to proactive identification and better care from health professionals for these patients who are at risk. Additionally, by mapping changes in mental health services across the region, the study aims to pinpoint immediate opportunities for improving care pathways that aren't reliant on commissioning. This endeavour aligns with the Policy Research Unit (PRU) Behavioural Sciences' focus on efficient and fair care, and our findings will be disseminated through PRU networks and closely connected with national policymakers.

Short term (2024 - Early 2025)

University of Newcastle Upon Tyne shares a footprint with the North East & North Cumbria ICB and this proposal complements their mental health workstreams. The recommendation on core service provision will aim to address ICS and regional needs. Evidence and practice recommendations will be produced for the above local health care providers and decision makers. This will include how services should be provided to meet the needs of ethnic minorities to reduce health inequalities and develop culturally competent services, and what should be provided, maintained or stopped in future emergencies. This will support NHS England and NHS Improvement’s (NHSEI) Restoration and Recovery Framework, which aims to address backlogs built up during the COVID pandemic and tackle long waits for care support in capacity for tests, checks and treatments. The study outcomes hope to add to the knowledge required to identify areas where improvements can be made to improve health care providers ability to treat patients and subsequently patient outcomes from these treatments by recognising current pressures and where changes can help address them.

Medium term (2025 - 2026)

Through examining patients’ pathways as well as lived experiences of participants, PPI partners and ethnic minority communities, the study hopes to identify areas where service of care is not fully meeting the needs of the patient, leading to the recognition of gaps in clinical management. Through sharing this information with healthcare providers, it is hoped that the study will provider decision makers with the necessary support to effectively plan arrangements to address current backlogs within the healthcare service as well as further recognise which will provide opportunities for service improvement.

The research also hopes to supplement subsequent research studies within the same area based on patient-centred evidence-based service development within mental health care services, evaluation and implementation.

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.

Clients will need to take action based on the information provided to them in order to realise the potential improvement opportunities. For example, health care providers may recognise a significant change in how members of the population view and interact with mental health services as a result of regulations set during the pandemic and risks associated with the more vulnerable. Healthcare providers would then be able to investigate alternate methods of delivering treatment, potentially through existing pathways, to help meet the needs of these patients.

Yielded Benefits is not a requirement for new applications.