SOCIAL AND ECONOMIC PREDICTORS FOR THE COURSE AND PROGNOSIS OF THE SEVERE MENTAL DISORDERS- THE SEP-MD DATA LINKAGE STUDY

Lead Research Organisation: King's College London
Department Name: Health Service and Population Research

Abstract

Despite more than thirty years of studies into the severe mental illnesses (SMI), including schizophrenia; central challenging questions remain around which factors most strongly predict course and outcomes of these conditions. People with SMI experience an 11 to 17 year reduction in life expectancy, an increased possibility of in-patient psychiatric admissions, and lower levels of employment, compared to the general population. Ethnic minority groups with SMI may experience even greater inequalities- with higher rates of compulsory admissions and social exclusion, compared to White British service users with SMI. Previous international work has suggested that the course of SMI may show strong variation with the environment, yet there has only been limited research conducted on whether social/ environmental factors potentially modify the course of SMI, with conclusions from studies affected by people being lost to follow up, sample sizes being too small, and with too few people of an ethnic minority background taking part, in order to enable robust conclusions. Traditional studies which follow people with SMI over time are time-intensive, expensive to run and logistically challenging to conduct, as tracing people over time is difficult. This project will address these important issues by linking UK Census data with the electronic clinical records from one of the largest secondary mental healthcare providers in Europe. This is an innovative data linkage as UK census is conducted every ten years and collects detailed information around important social indicators (for example, relating to household poverty, social isolation, migration status, employment and long-term worklessness) which are not usually available in good detail in health records. The clinical records will come from a major UK Mental Health Trust- South London & Maudsley Trust, which provides near-monopoly secondary mental healthcare to an ethnically-diverse, geographically defined urban area in London, with a catchment of approximately 1.2 million people.

Through the linkage we will create a cohort of 19,800 people with severe mental illnesses followed over a minimum of eight years and we will be able to assess the association of social factors such as household poverty, social isolation, ethnicity and migration status, alongside clinical factors such as diagnosis, prescriptions and severity of illness with our main outcomes- mortality, in-patient admissions (compulsory and voluntary) and long-term worklessness. We will aim to assess the characteristics of where people live (for example the effect of living in socially fragmented neighbourhoods or more deprived areas) alongside person-level level characteristics (e.g. being socially isolated, living in poverty, tobacco use, prescriptions, diagnosis and illness severity) and how these are associated with mortality risks in people with SMI. The linkage will also enable us to assess the association of social and clinical factors with in-patient psychiatric admissions (including compulsory detentions under the UK Mental Health Act). Finally the linkage will allow us to assess clinical and social factors predicting long-term worklessness, defined as being unemployed for more than a year and/ or never holding employment, in a sample of people with SMI. Our analyses will assess the interplay of all of these associations with ethnicity and migration status. Through our study we will also consider whether people with severe mental illnesses who are multiply disadvantaged- i.e.disadvantaged across a range of indicators, experience extreme health inequalities. We have developed the research questions with our non-Academic partners, Black Thrive and the Synergi Collaborative Centre, and will intend for the findings to directly inform public policy, service development and current research and discourses regarding the inequalities experienced by people living with severe mental illnesses.

Planned Impact

1.Academic beneficiaries-Researchers, postgraduate students: Researchers interested in data linkage and advanced analytic methodologies will benefit from knowledge gains, as will those involved in research on the course/ prognosis of the severe mental illnesses (SMI). Methodological advances will inform capacity building as we plan to embed related teaching in summer schools/ MSc modules, for researchers and postgraduate students.

2. People living with SMI and their carers, clinicians/ other healthcare providers: We have discussed the study with service users from the Mental Health Trust. They have indicated that having access to the findings through lay summaries will benefit them in understanding their mental illness. They agreed that understanding the role of broader social resources in determining rates of detention under the Mental Health Act would be useful for them to understand their situation better, particularly when advocating for their own healthcare needs. We also anticipate that the findings will inform and improve the therapies which are currently provided. For example the current UK NICE guidelines for the management of schizophrenia and bipolar disorders highlight the need to promote recovery through supported employment, occupation and educational activities, however this recommendation is partly based on very low quality evidence(1,2). The findings will have the potential to inform current NICE guidelines and inform the development of social interventions for the severe mental illnesses.

3. Policy makers: At present, a major review of the UK Mental Health Act, legislation which governs whether individuals with mental disorder should be involuntarily detained, is being undertaken. A reason for the review is because of the consistent finding that Black and Asian people are much more likely to be detained under the Mental Health Act than White British people(3). Our collaborators Black Thrive and the Synergi Collaboration Centre have indicated a paucity of evidence relating to the interplay of multiple disadvantage and ethnicity with these types of outcomes. Our study will inform this gap in knowledge.

4. Healthcare commissioning: Our partners, Black Thrive, are hosted by Health Watch Lambeth. Healthwatch Lambeth are directly involved in the commissioning of health services. The findings will inform local priority setting and commissioning.

5. Public health: The outcomes of mortality, admissions and longterm worklessness in people with SMI are of relevance to public health in the UK and internationally, e.g. been highlighted in reports by the World Health Organization(6) and NHS England(7). The findings will inform public health strategy locally and nationally.

5. Communities: We have planned capacity building/ community engagement workshops with Black Thrive, so that their membership may become conversant with the scientific findings. We anticipate that the workshops may empower lay members to utilise locally relevant data to inform their work, which includes priority setting.

6. Charities: Our impact and engagement partners, the Synergi Collaborative Centre, and our partners Black Thrive have an urgent need for this data to inform their work addressing multiple disadvantage, ethnicity and severe mental illness (Synergi) and mental health inequalities experienced by Black communities in Lambeth (Black Thrive). The findings will therefore have direct relevance to these two groups and others working in this area.

References
(1)https://www.nice.org.uk/guidance/cg178/chapter/1-recommendations#promoting-recovery-and-possible-future-care-2
(2)https://www.nice.org.uk/guidance/cg185/chapter/1-Recommendations#ftn.footnote_10
(3)http://synergicollaborativecentre.co.uk/wp-content/uploads/2017/11/Synergi_Report_Web.pdf
(5)https://lankellychase.org.uk/black-and-ethnic-minorities/
(6)http://www.who.int/mental_health/management/info_sheet.pdf
(7)https://www.england.nhs.uk/2014/01/mental-il
 
Description Work on this project has been severely delayed due to the impact of COVID-19. However, despite this we have conducted some preliminary work. In particular we have:
1. Created a linked dataset with controls- access to this dataset however is not yet possible due to COVID-19 restrictions.
2. We have learnt about challenges relating to data access in the UK and have contributed insights at a workshop hosted with other UK academics and NHS-digital, which was hosted by MQ. We have also provided input into a short commentary to help inform wider discussions about UK data access (currently under review).
3. Insights from early stages of this work has informed teaching to postgraduate students (MSc and PhD-level) on data linkage and mental health in the UK

***update 10/3/2022
The grant has been suspended for the past year due to the impact of COVID19, and related to this outputs and generation of new knowledge severely impacted. However we hope to resume shortly, pending the grant being resumed as our access to the linked data has recently been reinstated. The experiences of this project fed into a recent commentary on the challenges of mental health data access/ sharing- (see publications).
Exploitation Route The work has informed some discussions around data linkage in mental health. However please note severe and disappointing delays due to impact of COVID19.
Sectors Healthcare

 
Description See the other section- despite severe delays due to the COVID pandemic, early stages of this work have informed wider discussions relating to UK data access which the PI for the study has contributed to.
First Year Of Impact 2019
Sector Healthcare
Impact Types Policy & public services

 
Description Advisor to APMS surveys (national surveys of adult mental health in England)
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
URL https://digital.nhs.uk/data-and-information/areas-of-interest/public-health/national-study-of-health...
 
Description NHS-E/I data equalities working group (PCREF)
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description LISS DTP CASE ESRC +3 PhD studentship (as supervisor) Urbanicity and psychosis- are cities bad for mental health? Novel insights from UK data linkage and participant perspectives; mixed methods study
Amount £70,000 (GBP)
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 09/2021 
End 09/2024
 
Title Data linkage of UK census data to electronic mental health records from South London & Maudsley Trust (CRIS) 
Description This is the first ever/ de novo linkage of its kind in the UK. I have led the development of the ethical applications, study design and informed data linkage methods (being led by the ONS). The project has been supported by the UK ADRN. We hope to have access to our first linked datasets later this year (links to ESRC SDAI grant awarded recently) 
Type Of Material Data handling & control 
Year Produced 2019 
Provided To Others? No  
Impact TBC 
 
Description Collaboration with ONS 
Organisation Office for National Statistics
Country United Kingdom 
Sector Private 
PI Contribution We have worked with the ONS data linkage team successfully leading to a linked dataset between Census from England and Wales and mental health records from South London. Unfortunately access to the linked dataset has been suspended due to COVID-19 restrictions however we have started to develop a methodology paper describing the processes involved in establishing this dataset.
Collaborator Contribution ONS team set up the linkage between mental health data to ONS census data in a secure linked area and have provided controls. The team have also advised on a manuscript/ methods document (in prep) detailing the linkage. Work has been suspended however due to impact of COVID-19 pandemic.
Impact 1. Presentations to detail the linkage 2. Methods document (in prep)
Start Year 2019
 
Description Collaboration with the Centre for Mental Health 
Organisation Centre for Mental Health
Country United Kingdom 
Sector Hospitals 
PI Contribution The CMH is collaborating with us and supporting a +3 CASE PHD studentship on cities and mental health using linked data. The CMH will provide internship opportunities for the student and assist with policy and impact of the study. The project will cement collaborations with this charity and we will may be able to provide data/ intelligence to the charity relating to health outcomes and social determinants of severe mental illnesses which will help the charity with their work in this area
Collaborator Contribution as above
Impact successful PhD studentship (to start later this year)
Start Year 2020
 
Description APMS steering group member 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact I am a steering group member for the Adult Psychiatric Morbidity Surveys (APMS). I advise on planned future APMS data collection waves- next one is planned for 2022. Steering group members include DHSC representatives, Natcen representatives (who lead/ oversee data collection), NHS-E/ I and PHE representatives and clinical academics.
Year(s) Of Engagement Activity 2020,2021,2022
URL https://digital.nhs.uk/data-and-information/areas-of-interest/public-health/national-study-of-health...
 
Description NHS-E/I Working group on data and mental health equalities 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact I am a working group member for an NHS-E/ I national panel to tackle issues linked to data (recording in patient records) of information related to protected characteristics (ethnicity, gender, disability etc). This working group was set up in response to the Patient and Carer Race Equality Framework (PCREF) a national initiative which was set up to tackle inequalities identified during the Mental Health Act (MHA) review in 2018. Decisions resulting from the group will lead to improvements in routine data collection of protected characteristics, captured during contacts with mental health services, nationally.
Year(s) Of Engagement Activity 2021