Cohorts as Platforms for Mental Health research (CaP:MH)

Lead Research Organisation: University of Bristol

Abstract

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Technical Summary

We will enhance two of the UK’s premier population based birth cohorts to create an intergenerational, integrated resource for mental health research with an unparalleled capacity to consider the importance of the early life course. This resource will be readily discoverable and available through a proven secure informatics platform with the flexibility to incorporate
other cohorts as part of a larger resource. The Avon Longitudinal Study of Parents and Children (ALSPAC) and the Born in Bradford (BiB) cohorts together include over 40,000 participants across three generations. Both cohorts are deeply phenotyped through clinic and questionnaire assessments and further enhanced through multi-omic measures and linkage to routine health and social records. We will extend this linkage to a comparable level in both cohorts particularly
to primary care patient records ensuring this is higher than in any comparable study based on the multiple strategies we have developed and the strengths of our underlying ethical and technical infrastructure. To this resource we will add additional measures from internet based applications and social media feeds underpinned by our expertise in data science and our strengths in participant engagement. Indicative projects, both individually in each cohort and across the integrated cross-cohort resource, will demonstrate value in enabling mental health discovery. In these projects we will further develop and deploy innovative bioinformatic and biostatistical approaches to facilitate discovery and strengthen causal inference developed in our MRC Integrative Epidemiology Unit to maximise the value that existing information can add to observational research. We will build on ALSPAC’s established, sustainable infrastructure for secure, cost-efficient data sharing based on our own instance of the UK Secure E-research Platform (UKSeRP), extending this to include BiB and providing the foundation of a Mental Health Data Platform to support discovery science and service evaluation at a scale that will underpin our ability to understand and effectively improve mental health in individuals and the population.
 
Description Leading joint academic-NHS review on methods to onward share linked NHS records
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
Impact A joint piece of work between CLOSER (led by Andy Boyd & Alison Park) and NHS Digital (led by Garry Coleman & Estelle Spence) through the NHS Digital Research Advisory Group. The work included conducting a stakeholder needs analysis amongst the longitudinal studies community (two workshops held) and a report generated. The findings are leading to a clearer and more efficient mechanisms to maximise the research value of the secondary use of routine health records in order to develop and more effective and efficient NHS.
URL https://digital.nhs.uk/services/research-advisory-group
 
Description LONGITUDINAL ADMINISTRATIVE DATA SPINE SCOPING PROJECT GRANT FOR THE SPF UK POPULATION LAB WAVE I
Amount £236,901 (GBP)
Funding ID ES/S016732/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 12/2018 
End 03/2019
 
Description Mapping Neurodevelopmental Trajectories for Adult Psychiatric Disorder: ALSPAC-MRI-II
Amount £1,791,731 (GBP)
Funding ID MR/S003436/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 12/2018 
End 11/2022
 
Description Using birth cohorts to understand the impact of urban green space on child health and wellbeing
Amount £79,929 (GBP)
Funding ID 2081026 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 10/2018 
End 03/2022
 
Title Data Access Agreement (DAA) data sharing contract 
Description The data access agreement is a new data sharing contract which is compatible with contemporary legislative (e.g. General Data Protection Regulations) and research governance expectations. It aligns with ALSPAC's Online Proposal System for efficient generation of specified and controlled data requests. Importantly, the DAA enables the replication of third-party data owner requirements and the addition of particular governance controls for specific datasets (e.g. geo-spatial datasets), and as such is an important element in ALSPAC's process to allow onward sharing of linked health, geo-spatial and social records. 
Type Of Material Improvements to research infrastructure 
Year Produced 2018 
Provided To Others? Yes  
Impact The DAA is a central component in ALSPAC's negotiations with NHS Digital to enable onward sharing of linked records. 
URL http://www.bristol.ac.uk/alspac/researchers/access/
 
Title Data Privacy Impact Assessment Process 
Description A new privacy assessment tool for ALSPAC which enables the assessment of data flows (i.e. new record linkages or new data sharing with research users) in line with EU General Data Protection Regulation requirements. The tool allows the assessment of diverse risks and particular research scenarios (e.g. the use of geocoded data in the research process, the additional sensitivities of using mental or sexual health records in research investigations. 
Type Of Material Improvements to research infrastructure 
Year Produced 2018 
Provided To Others? No  
Impact Ensuring ALSPAC data sharing is legally compliant. 
 
Title A longitudinal extraction framework and standard for electronic primary care records 
Description Using CLOSER cohort consortium innovation funding Andy Boyd led a group of longitudinal studies (including Born in Bradford and UK Biobank) to develop a standardised framework for longitudinal extracts of electronic primary care records (being prepared for publication). Through 'Cohorts as Platforms for Mental Health research (CaP:MH) ALSPAC and Born in Bradford are working with EMIS Ltd (the English market leading software provider for General Practices') to use this framework to develop and extraction standard (which will be published as open source in the public domain). This standard will then be realised by EMIS Ltd as a proprietary software product (owned by EMIS Ltd) to link and extract longitudinal copies of participants records in an efficient, accurate, secure and transparent manner. 
Type Of Technology Software 
Year Produced 2018 
Open Source License? Yes  
Impact It is intended that this product will provide an efficient and consistent extraction pipeline which will generate consistent outputs which will can be harmonised and used in cross-cohort studies. 
 
Description MRC Pathfinder meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Workshop organised by the MRC to give all Pathfinder projects opportunity to provide updates on their progress, network and discuss potential collaboration
Year(s) Of Engagement Activity 2019
URL https://mrc.ukri.org/funding/browse/mh-data-pathfinder/mental-health-data-pathfinder/