Assessing the Relationship Between Minority Group Status and Psychosis; Exploring Causal Mechanisms

The University of Liverpool is requesting the Adult Psychiatric Morbidity Survey (APMS) dataset for use in studies as part of a PhD research project being carried out by the applicant, aiming to answer the question: How does the experience of social adversity (including discrimination, bullying, reduced social support and trauma) explain the relationship between minority group status and psychosis, including specific psychotic symptoms such as paranoia?

The primary aim is to assess two different minority groups.

The first of these groups is ethnic minorities. The study team is aware that analyses of prevalence of psychotic disorders within such groups is already carried out in the APMS report. However the analyses do not look any deeper into factors including social adversities which may potentially elucidate explanatory mechanisms (Morgan, Charalambides, Hutchinson, & Murray, 2010), which will be the aim of the current project. There is also evidence that the experience of discrimination in ethnic minorities may be related persecutory delusions (Janssen et al., 2003), as well as symptoms of paranoia generally (Qi et al., 2019), and thus it will be important to look at causal pathways for such specific symptoms.

The study team also aim to investigate sexual minority groups. Evidence suggests non-heterosexual groups have elevated rates of psychosis (Bolton & Sareen, 2011), and related symptoms which may be explained by social adversity (Gevonden et al., 2014). A past study by the applicant using the APMS2007 data found that sexual minority status was related to paranoia symptoms specifically through social adversity pathways (Qi et al., 2019). The aim will be to replicate the findings using the 2014 sample.

Justification for the processing of the data is under Article 6(1)(e) of the GDPR, for the performance of a task in the public interest; and Article 9(2)(j) of the GDPR, where processing of the data is necessary for archiving purposes in the public interest. In order to inform the treatment of severe mental health disorders in minority groups, and to develop an evidence-based approach to public mental health, it is necessary to identify how a number of different social factors are associated with such disorders. Unfortunately, research into such factors is currently very limited.

It is hoped that the research using the APMS data will inform the understanding and treatment of severe mental health in already disadvantaged groups. Thus, processing of the data also meets conditions for Part 2 of Schedule 1 of the Data Protection Act 2018, under Health and Social Care purposes. These purposes include (c) medical diagnosis, through improving understanding of aetiology and symptoms of psychosis, and also (d) the provision of healthcare or treatment, and (e) the provision of social care.

A number of aspects of the APMS data would allow the identified aims to be achieved. Psychosis and related symptoms are rare in the general population, especially within minority groups. A large nationally representative survey allows for adequate statistical power to analyse such groups, as well as understand the phenomena within an accurate UK context. The data set also contains the relevant variables relating to group identity, specific symptoms, and experiences of social adversities. Different analyses will be utilised. Logistic regression models, as well as mediation models appropriate for binary outcome data will primarily be used. New techniques may also be incorporated as they emerge.

The PhD project that the application is part of has been underway since September 2017 and will run until at least September 2021. The APMS data will be used for the identified studies, which will be part of the PhD thesis. The data requested will be pseudonymised and represents the least intrusive manner of achieving the aims of the application. Pseudonymised data mitigates the risk of re-identification. There is no requirement or intention to reidentify individuals.

The high level aggregate survey results were published as National Statistics in September 2016, but due to the sensitive nature of the underlying data, they have been assessed by the Disclosure Control Panel (DCP), resulting in significant reductions in the disclosure risk by removing key geographic variables and other household identifiable variables

The University of Liverpool is the sole data controller, with sole autonomy for determining the purpose and manner for processing the APMS data. Data will only be processed by the applicant and their supervisory team who are substantive personnel of the University of Liverpool. No other persons or organisation will process the data.

The 2014 APMS data set 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. The University of Liverpool will receive the pseudonymised APMS data set. There is no facility to select individual variables. The University of Liverpool will be able to download the data set from UKDS for the period specified within the Data Sharing Agreement and must securely destroy all local copies of the data set when the Agreement expires and notify NHS Digital in line with standard procedures. This 2014 version of the data set available has been redacted on Disclosure Control Procedure advice to minimise the likelihood of individuals being able to identify anyone taking part in the survey.

UKDS will transfer the pseudonymised APMS data to the University of Liverpool. No other organisations will be involved in the flow of data.

There will be no flow of data into NHS Digital identifying special categories of personal data such as health data, and no such flow of data out of NHS Digital.

Processing by the University of Liverpool will involve the analysis of the data using standard statistical packages such as STATA in order to achieve the stated purposes. Only aggregate data will be used in any resulting research reports. There will be no linkage of data, and data will not be matched to publicly available data. There will also be no requirement nor attempt to re-identify individuals from the data.

Processing of data will be carried out only by employees of the University of Liverpool who have been trained in data protection and confidentiality, in line with GDPR. NHS Digital restricts access to the datasets to further mitigate the risk so that it is remote. The APMS survey data will therefore only be available to a limited number of individuals for specific and limited purposes described in this Agreement.

Data will only be accessed in a secure environment, on systems within the premises of the University of Liverpool. Data will only be stored on password protected computers on University premises, which are only physically accessible to employees of the University. Only the authorised personnel will have access to the data.

All organisations party to this agreement must comply with the Data Sharing Framework requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e. employee, agents and contractors of the Data Recipient who may have access to that data).

In order to protect patient confidentiality in any publications resulting from analysis of APMS data, researchers will:

i. Guarantee that any outputs made available to anyone other than those with whom this agreement is made, will meet required standards, including the guarantee, methods and standard contained in the Code of Practice for Official Statistics and the ONS Statistical Disclosure Control for tables produced from surveys.

ii. Apply methods and standards specified in the Microdata Handling and Security Guide to Good Practice for disclosure control for statistical outputs.

Following processing of the data, a number of expected outputs will be produced including: submissions to peer reviewed journals in psychology and psychiatry (i.e. Social Psychiatry and Epidemiology); presentation of the work in relevant university groups; and submitted for presentation at relevant international conferences. Information in multiple forms appropriate for the public will also be produced.

All outputs will only contain data that is aggregated in line with NHS Digital guidelines, and will contain no individual level data.

A number of dissemination channels will be utilised. Journal submissions and presentations will likely primarily reach the scientific research community. Beyond this, attention will be paid to the use of language so that findings are disseminated in an understandable form for wider audiences. Social media channels will also be used to reach both academic as well as the general public. Engagement will also be sought using both new and established relationships, particularly with organisations focusing on LGBT and ethnic minority mental health, in order to reach relevant stakeholders. Engagement with policy makers will also be attempted more directly at relevant events and meetings. The aim will be to both inform research, public understanding, policy and practice, with the intention of improving health and social care outcomes for the relevant groups.

Communication channels within the research group and department will also be used, which include methods such as an online website, internal newsletters and online blogs. The University of Liverpool communications team will also be consulted in terms of potential wider communication strategy.

The research will result in the development of new tools or technologies.

All outputs are expected to be produced by the completion of the PhD project (September 2021), though journal submissions will be attempted by September 2020.

In order to protect patient confidentiality in publications resulting from analysis of APMS data users must:

• guarantee that any outputs made available to anyone other than those with whom this agreement is made, will meet required standards, including the guarantee, methods and standards contained in the Code of Practice for Official Statistics (http://www.statisticsauthority.gov.uk/assessment/code-of-practice/index.html) and the ONS Statistical Disclosure Control (https://gss.civilservice.gov.uk/statistics/methodology-2/statistical-disclosure-control/) for tables produced from surveys;

• apply methods and standards specified in the Microdata Handling and Security Guide to Good Practice (http://www.data-archive.ac.uk/media/132701/UKDA171-SS-MicrodataHandling.pdf) for disclosure control for statistical outputs.

The sharing of the APMS data will benefit healthcare and social care. The research will contribute to the understanding of psychotic disorders and symptoms, as well as the social factors which may play causal roles in such disorders. Understanding these issues within minority groups who already face considerable inequality in both outcome as well as treatment is a priority. For example, improving understanding, assessment and treatment in those from ethnically and culturally diverse groups is currently a key recommendation by the National Institute for Health and Care Excellence (NICE). In this way, sharing of the data is in the public interest.

Regarding the Health and Social Care purposes (Part 2 of Schedule 1 of the Data Protection Act 2018, including (c) medical diagnosis, through improving understanding of aetiology and symptoms of psychosis, and (d) the provision of healthcare or treatment, and (e) the provision of social care), the outputs will help achieve these purposes and the stated benefits of processing. Any journal articles and presentations, as well as other outputs and dissemination resulting from the processing of the data by the University of Liverpool will inform the research community, healthcare providers, and the public in terms of understanding the pathways by which minority groups may come to experience psychotic symptoms. This will have an influence on the accurate diagnosis of related disorders. Understanding of social adversity and it’s relation to psychotic symptoms will also improve the care and treatment of minority groups, such as through improved therapeutic interventions, and reducing the barriers to care for groups such as LGBT and ethnic minorities which is exacerbated by poor understanding from healthcare professionals (Mayer et al., 2008; Ojeda & McGuire, 2006).

Changes relating to the outputs will potentially be carried out by a wide variety of third parties as well as the University of Liverpool who have personnel with links to healthcare and policy.

Overall it is difficult to estimate or measure the magnitude of the impact for the benefits of processing, as well as the date such benefits will be achieved. However, according to NICE, the service costs in 2007 for schizophrenia in England was estimated to be £2.2 billion rising to £3.7 billion by 2026, with lost employment costs being estimated to be £4 billion in 2007. The international costs of schizophrenia and such psychotic disorders can therefore also be assumed to be great. Improving diagnosis, and the treatment of such disorders, will however reduce some of the economic and social costs.

The PhD project overall will aim to improve understanding of psychosis in minority groups through understanding of social issues, and the dissemination of the APMS data is necessary to provide quantitative evidence for this purpose.

Yielded Benefits is not a requirement for new applications.