Leveraging routinely collected and linked research data to study the causes and consequences of common mental disorders

Lead Research Organisation: University of Edinburgh

Abstract

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Technical Summary

Our vision is to link consented research studies and genomic resources with clinical and administrative data to create a structured secure infrastructure for studies into the causes and consequences of psychiatric disorders. Our ambition to implement this infrastructure across the whole of the UK.
We seek to accomplish our initial aims in Edinburgh, where there is world-leading health informatics, rich data resources covering the whole lifespan and a multidisciplinary environment with access to domain-specific knowledge and expertise. Our application builds upon key MRC and charitable investments, such as the Farr Network, HDR-UK, DPUK and important recent
developments in Edinburgh such as the Bayes Institute and the ‘City Deal’ (£1Bn funding).
A participant-unique NHS identifier is in universal use throughout Scotland, where there is existing and rapidly developing NHS and academic medical informatics capacity on which to build resources and expertise specifically in mental health. There are rich data resources, including prospective cohorts covering the whole lifespan, population-wide datasets, studies
covering specific patient and at-risk groups and developing biorepositories. This combination of
infrastructure and resources makes Edinburgh’s potential for mental health data science without
parallel in the UK.
An Edinburgh-based MRC Data Pathfinder award would facilitate a step-change in multidisciplinary mental health research, including collaborators and disciplines from throughout the UK. Our Pathfinder, in collaboration with other award holders, will form a major component
of a future UK Mental Health Platform.
 
Title Risk game 
Description We have created a physical model and dice that convey the nature of genetic risk to psychiatric illness in general and depression in particular. 
Type Of Art Artwork 
Year Produced 2019 
Impact We used this artwork to engage politicians (MSPs) in February 2019 at the MRC Scottish Parliament event and we will use the item again in April at the Edinburgh Science Festival 
 
Title Videos around data sharing, linkage and security 
Description We have prepared a series of videos, images and other materials around the safe use and linkage to non-research data that was collected from the NHS and other providers 
Type Of Art Film/Video/Animation 
Year Produced 2018 
Impact We have noted, through our web page, twitter channels, and you tube site, growing interest and engagement from the public 
URL https://mhdss.ac.uk
 
Description The Airwave Health Monitoring Study (AHMS). An Occupational Cohort Study of the British Police Forces.
Amount £1,988,965 (GBP)
Funding ID MR/R023484/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 07/2018 
End 06/2023
 
Description Collaboration with Register for SHARE 
Organisation University of Dundee
Country United Kingdom 
Sector Academic/University 
PI Contribution We have provided expertise in the identification, epidemiology and measurement of mental disorders - particularly depression, anxiety and their treatment
Collaborator Contribution Colleagues at NHS SHARE (https://www.registerforshare.org/) have provided materials, facilities and expertise to facilitate access to data on mental health problems across Scotland, the diversion of routine blood samples from NHS laboratories for research and navigating the necessary administrative and regulatory hurdles
Impact We are currently planning a pilot and a full Scotland-wide rollout in 2019/2020
Start Year 2018
 
Description Collaboration with the Administrative Data Research Centre Scotland regarding the preparation and use of historic data 
Organisation Administrative Data Research Centre for Scotland
Country United Kingdom 
Sector Academic/University 
PI Contribution Our team provided the initial cohort for use as a feasibility case for preparing, tracing and linking historic administrative data (e.g., birth records from 1935-1937). We also prepared methodological documentation and applications for ethical, public benefit and data controller approval.
Collaborator Contribution The Administrative Data Research Centre Scotland have provided access to a project coordinator who has helped to prepare important documentation and has provided administrative support.
Impact Project-specific research protocols Project-specific tracing and linkage methodology Ethical, public benefit and data access approvals
Start Year 2018
 
Description Engagement with UK Mental Health Pathfinders and 3rd sector organisations 
Organisation Cardiff University
Country United Kingdom 
Sector Academic/University 
PI Contribution We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research
Collaborator Contribution The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research
Impact Significant publicity and public engagement generated
Start Year 2018
 
Description Engagement with UK Mental Health Pathfinders and 3rd sector organisations 
Organisation King's College London
Department Institute of Psychiatry, Psychology & Neuroscience
Country United Kingdom 
Sector Academic/University 
PI Contribution We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research
Collaborator Contribution The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research
Impact Significant publicity and public engagement generated
Start Year 2018
 
Description Engagement with UK Mental Health Pathfinders and 3rd sector organisations 
Organisation Kings BRC
Country United Kingdom 
Sector Academic/University 
PI Contribution We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research
Collaborator Contribution The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research
Impact Significant publicity and public engagement generated
Start Year 2018
 
Description Engagement with UK Mental Health Pathfinders and 3rd sector organisations 
Organisation McPin Foundation
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research
Collaborator Contribution The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research
Impact Significant publicity and public engagement generated
Start Year 2018
 
Description Engagement with UK Mental Health Pathfinders and 3rd sector organisations 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research
Collaborator Contribution The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research
Impact Significant publicity and public engagement generated
Start Year 2018
 
Description Engagement with UK Mental Health Pathfinders and 3rd sector organisations 
Organisation University of Cambridge
Country United Kingdom 
Sector Academic/University 
PI Contribution We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research
Collaborator Contribution The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research
Impact Significant publicity and public engagement generated
Start Year 2018
 
Description Engagement with UK Mental Health Pathfinders and 3rd sector organisations 
Organisation University of Glasgow
Country United Kingdom 
Sector Academic/University 
PI Contribution We have provided a webbed questionnaire, knowledge, expertise, a patient expert panel and a web-portal to collect public attitudes to the use and sharing of health data for research
Collaborator Contribution The other pathfinders have provided a knowledge, expertise, their own web-portals to collect public attitudes to the use and sharing of health data for research
Impact Significant publicity and public engagement generated
Start Year 2018
 
Description NHS Service Division partnership on data linkage for mental health research 
Organisation NHS National Services Scotland (NSS)
Country United Kingdom 
Sector Public 
PI Contribution We have contributed knowledge, expertise and time to the identification of methods for health data linkage - and public engagement and social licence for any activities undertaken
Collaborator Contribution NHS NSS have contributed knowledge, expertise and time - including access to ethics and privacy committee reviews and advice.
Impact We have received approvals for work streams within our MRC funded Pathfinder project
Start Year 2018
 
Description Celebration of Scottish Health Research Cohorts 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact We held a celebration of Scottish health cohort research by inviting members of the Lothian Birth Cohorts, Theirworld Edinburgh Birth Cohort, The Edinburgh High Risk Studies of Schizophrenia and Mood disorders and Generation Scotland to a day of focus groups and pubic lectures. The work, which featured in the MRC's own publications in late 2018, including surveying participants and accompanying family members about their attitudes to sharing health data with health practitioners, researchers and industry. We also identified whether people were keen to share data generated from their Guthrie (heel prick) cards, that have been stored in Scotland from the 1970s
Year(s) Of Engagement Activity 2018
URL https://www.youtube.com/playlist?list=PLNKgsEbom_ZeNu7fsX75Ed5YzmfbLjBD3
 
Description Engagement with Scottish Parliament MSPs 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact We participated in an event held at the Scottish Parliament to showcase MRC funded research in Scotland. We met with many MSPs including the Mental Health Minister and the Minister for Sport. We held productive conversations and follow-on meetings are in the process of being arranged
Year(s) Of Engagement Activity 2019
URL https://www.parliament.scot/visitandlearn/104642.aspx
 
Description Presentation and group discussion - ADRC-S Public Panel 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact We presented information on the intended data linkage study and methodology to the Administrative Data Research Centre Scotland's Public Panel, consisting of informed lay individuals. Around 10 people were in attendance, of various ages and backgrounds. The activity also included discussion on the purpose of data linkage for research, as well as individual's attitudes and opinions on the use of historic and health data for research purposes. Panel members also provided useful suggestions which have helped inform future engagement strategy.
Year(s) Of Engagement Activity 2018
 
Description Presentation and group discussion - Stakeholder Advisory Group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact We presented information on the intended data linkage study and methodology to Edinburgh's Mental Health Data Pathfinder Stakeholder Advisory Group, consisting of informed lay individuals, patients, and related third sector workers. Around 8 people were in attendance, of various ages and backgrounds. The activity also included discussion on the purpose of data linkage for research, as well as individual's attitudes and opinions on the use of historic and health data for research purposes. Panel members gave feedback regarding the proposed methods and asked further questions about the possibilities of health data linkage in Scotland, as well as the governance surrounding access to such data. Panel members also provided useful suggestions which have helped inform future engagement strategy.
Year(s) Of Engagement Activity 2019