Contextual determinants and participant perspectives on the common mental disorders and access to psychological treatments in UK ethnic minorities: mixed methods study utilising data from the Adult Psychiatric Morbidity Surveys (APMS).

King’s College London (KCL) is requesting APMS 2014 data for use in a doctoral research project investigating mental health inequalities in ethnic minority communities in the UK, titled Contextual determinants and participant perspectives on the common mental disorders and access to psychological treatments in UK ethnic minorities: Mixed methods study utilising data from the Adult Psychiatric Morbidity Surveys (APMS). The project is being conducted at the Department of Psychological Medicine, at the KCL Institute of Psychiatry, Psychology, and Neuroscience together with the National Centre for Social Research.

The research project was a successful proposal to a studentship competition held by the London Interdisciplinary Social Science Doctoral Training Partnership (LISS DTP). LISS DTP objectives include addressing key research priorities and global societal challenges across a breadth of interconnected social science disciplines, enabling postgraduate research at the interface with health, the natural sciences, engineering, and the arts and humanities. The programme trains social science research students to work collaboratively with peers and service users alike, and to have a global outlook in career development, employability, entrepreneurship, public engagement, and impact.

LISS DTP’s Collaborative (CASE) Studentship programme promotes partnerships between social scientists at participating universities and end-user, non-academic partner institutions, to initiate longer-term partnerships and to ensure the impact of research. More information can be found on the LISS DTP website (https://liss-dtp.ac.uk/case-studentships-student-applicants/#1513161186335-8d31ca62-50b7).

The project in this Agreement is between university partner King’s College London (KCL), the Data Controller, and the non-institutional partner, National Centre for Social Research (NatCen), the Data Processor. The project research analysis work will be conducted at KCL, where the PhD student is based and which will direct the research work overall. The role of NatCen is secondary and will be to support the student in managing the data towards the project (such as through data linkage activities) and provide the student with general training in research skills, developing studies, and translating research into policy. Therefore NatCen remains only a Data Processor for the purposes of this project. The role of NatCen is to support the student to manage data and develop the skills necessary to best analyse and communicate the results of this research project.

The aim of the research work is to address the longstanding concerns in the UK that Black and Minority Ethnic people experience inequalities in access to mental health treatments. Targeting policy to address inequalities in these groups are part of NHS strategy on mental health. A number of reasons for low levels of access to treatments by ethnic minority groups in the UK have been proposed in recent research. This study seeks to establish reasons behind the treatment gap for CMD in ethnic minority groups within the UK.

The project combines a quantitative study and qualitative study to investigate the contextual determinants and participant perspectives on the common mental disorders and access to psychological treatments in UK ethnic minority groups. The quantitative analysis part of the project seeks to utilise data from the Adult Psychiatric Morbidity Surveys (APMS).

This research seeks to assess these aims:

1. Prevalence, risk factors and trends in common mental disorders (CMD) stratified by ethnicity (particularly individual-level risk factors in ethnic minority groups).

2. Differences in reported access to treatments for each main ethnic minority group within APMS, and individual-level predictors for this.

The research seeks to use individual-level data from APMS 2007 and 2014 linked to area-level information, to assess:

3. Association of area-level deprivation and proportion of ethnic minorities with outcomes: prevalence of CMD and reported access to treatments for CMD.

Using a nested qualitative study (protocol to be developed for later approval):

4. To gain an understanding of mental health care access barriers in people purposively sampled from high and low own ethnic density areas.

The work aims to develop understanding and evidence base for inequalities to access in mental health treatment. Improving the equality of access to and outcomes in mental health services for ethnic minority groups is a policy focus area for the NHS, as outlined in the Five Year Forward View for Mental Health.

This new investigation seeks to build on recent analysis of APMS data as well as wider research in trends in mental health problems and access to mental healthcare by ethnic minority groups in the UK. Black people are more likely to experience complex pathways into mental healthcare, with less contact with primary care and more experience of coercive pathways. Recently released data from the 2014 APMS indicated that Black respondents were less likely to receive treatments for Common Mental Disorders (CMD) than White British respondents. An analysis utilising consecutive APMS surveys indicated that Black respondents with CMD were less likely to be prescribed antidepressants than White respondents and less likely to have reported seeing their GP for a mental health problem. Further investigation into the reasons behind this is an objective of this project. Similarly, authors of a nationally representative survey of ethnic minorities living in the UK, noted low levels of psychological service access by Indian, Pakistani and Bangladeshi people, despite high levels of primary care consultation.

APMS 2014 data is therefore required from NHS Digital in order to carry out the above outlined study in order to investigate these key research questions further through analysis of a nationally representative survey into CMD.

Updated objectives, October 2021:

Overall aims and objectives remain, with slight adjustments considering changes to PhD workplan, data access issues, and feasibility.

The quantitative analysis seeks to utilise data from the Adult Psychiatric Morbidity Surveys (APMS) to assess these aims:

1. Prevalence, risk factors and trends in CMD stratified by ethnicity, as identified by respondent scores the Clinical Interview Schedule-Revised questionnaire (CIS-R).

2. Differences in reported access to treatments for each of the main ethnic minority groups within the survey.

3. Individual-level predictors for accessing care.

Given delays to data access, aim 3 listed in 2018 (to use individual-level data from APMS 2007 and 2014 linked to area-level information, to assess association of area-level deprivation and proportion of ethnic minorities with outcomes) was removed from the overall project. The qualitative study was adapted and aimed to assess participant perceptions and experiences of mental health problems and mental health care. This was a purposive sample of participants from different ethnic minority backgrounds from South London who have some experience of mental health problems or any counselling or therapy. Mental health practitioners and researchers were also interviewed for insight into this area of inequalities.

These activities remain in the public interest, as the research aims are necessary to pursue as targeted and proportionate means of contributing to the mental health evidence base to meet a public interest, namely the priority policy area of tackling persistent inequalities in mental health outcomes for people from ethnic minority backgrounds in the UK. Article 6(1)(e) and 9(2)(j) are the applicable GDPR lawful bases for processing this data.

The study is funded by the Economic and Social Research Council (ESRC), however the ESRC do not make any decisions regarding the data under this Agreement nor do they access or process this data. The ESRC is therefore not considered to be a data controller or data processor for the purpose of this Agreement.

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 ie: employees, agents and contractors of the Data Recipient who may have access to that data).

The 2014 APMS dataset is held on behalf of NHS Digital by the UK Data Service (UKDS) (www.ukdataservice.ac.uk ) and UKDS are responsible for dissemination under direction by NHS Digital. UCL will get the whole dataset; there is no facility to select individual variables. They will be able to download the dataset from UKDS for the period specific within the DSA and they must securely destroy all local copies of the dataset when the DSA expires and notify DARS in line with standard procedures. This 2014 version of the dataset available via DARS has been redacted on Disclosure Control Procedure advice to minimise the likelihood of individuals being able to identify anyone taking part in the survey.

Record level APMS 2014 data is requested, which will flow from NHS Digital to KCL, the Data Controller in this application. NatCen, the Data Processor in this project, are already data custodians of APMS, therefore no flow is required to enable data access for project research at NatCen.

KCL and NatCen store data on a server on site which can be remotely accessed via secure, password protected computers supplied by the institutions.

Data will only be accessed by individuals within KCL and NatCen who have authorisation to access the data for the purpose(s) described, all of whom are substantive employees of KCL and NatCen or personnel (research student on LISS DTP ESRC studentship) working under supervision on behalf of KCL and NatCen.

There will be no requirement nor attempt to reidentify individuals from the data.

The 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.

The APMS 2014 dataset is requested to conduct research in mental health problems and access to mental healthcare in ethnic minority groups in the UK, building on the gaps identified in the Objective for Processing section. Nationally representative data is required to reach generalisable conclusions which are relevant for public health policy and programme development in this sector of health. Given the APMS data is already pseudonymised, the required degree of data minimisation has already been ensured.

Only KCL and NatCen (who are already data custodians of the APMS ) will have access to record level data, which will only be enabled through secure, password protected KCL computers operated by the research student and supervisors.

Where applicable, confirmation that there will be no requirement/attempt to re-identify individuals

Confirmation that data processing is only carried out by substantive employees of the data processor(s) and or data controller(s) who have been appropriately trained in data protection and confidentiality.

Using the data under this Agreement, a presentation based on APMS 2007-2014 data analysis was delivered to the UK Data Service Health Studies User Conference in July 2021, reaching an audience of researchers and data producers of key UK social surveys.

An open access research article based on findings of APMS 2007-2014 data is currently under review for publication at the British Journal of Psychiatry, with an anticipated publication date in late 2021 or early 2022 dependent on editorial review. This will be contributing to the evidence base with a journal whose mission is to improve mental health, reaching a readership of all members of the Royal College of Psychiatrists, which includes most psychiatrists working in the UK, together with clinical psychologists, and all professionals with an interest in mental health, in the UK and internationally through the journals’ subscriber base.

A more specific dissemination plan will be developed in the final stages of thesis development. Engaging with the LISS DTP and KCL Culture teams, creative outputs will be developed, such as animated short film and infographics, to share summary results from the PhD project in accessible language, targeting mental health practitioners and service providers, researchers, and policymakers as well as local community group and general audience.

It is hoped that the outputs of this project will contribute towards a better understanding of the issues facing those from ethnic minority backgrounds who access pyschological treatments. Through publication (in peer reviewed journals), promotion (through institutional websites/social media) and presentations (through the Health Inequalities Research Network) the findings will influence policy makers with responsibility for tackling health inequalities.

Due to delays associated with COVID-19 pandemic response measures, an extension to the submission of the PhD has been obtained, with a revised submission date for the doctoral thesis to June 2022. A doctoral thesis will be submitted to the relevant reviewing committee at the KCL Institute of Psychiatry, Psychology, and Neuroscience, which will cover all key findings of the study. Once assessed, the findings will be submitted for publication to open-access, and peer reviewed journals,

Further research conference posters and/or oral presentations will be submitted to the Health Inequalities Research Network Conference.

For each paper published on the research, short presentations will be developed to summarise the findings for different stakeholders, including local BME service user groups.

Institutional websites/ social media accounts will be used to promote findings through summaries or links to published work - for example host blog posts on King’s Health Partners and NatCen websites, and through institutional Twitter accounts to promote engagement efforts so that research benefits reach communities to support improved health outcomes.

All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide/compliant with the MHSDS disclosure control rules including suppression and rounding.

These research outputs seek to directly increase the evidence base in mental health inequalities in England for ethnic minority groups, for whom there are longstanding concerns about access to mental health treatment. By increasing the evidence base, an indirect objective is to contribute further to improved public health policy and programming. The eventual aim would be to achieve benefits to health through support for improved access to services and therefore quality of life for these groups.

The sequence of events required to achieve this would first be delivering outputs, conducting stakeholder mapping to identify relevant stakeholders with whom to discuss results, engagement with stakeholders on results to discuss their uptake. At this point, actual expected benefits and magnitude are as yet not quantified given data analysis has not been conducted. However through the course of the doctoral project a more detailed dissemination plan focusing on policy recommendations that emerge from the research will be formulated to formalise these steps, and progress will be shared with NHS Digital.

Outputs will be primarily discussed and presented in engagement through the Health Inequalities Research Network (HERON), led by the project co-supervisor. HERON is an international public engagement network funded by the Welcome Trust, aimed at people involved in action and research in inequalities in health and health service use (further information linked here). HERON conferences, seminars and talks are hosted with a range of stakeholders including voluntary sector advocates and health practitioners. It is reasonable to expect these benefits will be realised primarily because the research results will have policy implications for ethnic minority groups already targeted for policy focus for improved health outcomes, and further because the dissemination strategy is working closely with established networks such as HERON to leverage impact.

As coordinated by the HERON network, the project results will be disseminated with organisations tackling health inequalities in ethnic minority communities such as Black Thrive, as well as with practitioners through organisations such as King’s Health Partners.

The target policymakers for this research project would be Public Health England (PHE), and the Department of Health and Social Care. Engagement with research is already outlined as a responsibility for PHE, therefore efforts will be made with this project to communicate with relevant teams working on mental health to ensure any policy recommendations that emerge towards reducing mental health inequalities for ethnic minority communities, a target group for PHE, can be followed up.

Engagement with local BME service user groups will enhance knowledge exchange with wider audiences. Further engagement will also be strategised with NatCen and LISS DTP teams.

Due to delays associated with COVID-19 pandemic response measures, an extension to the submission of this PhD has been obtained, with a revised submission date for the doctoral thesis to June 2022.

Whilst some outputs have already been delivered using the data under this Agreement, the yielded benefits have yet to be realised. This section of the Agreement will therefore be updated in any subsequent Agreement.