Data platform could accelerate care for mental health conditions

Five initiatives have today been announced that will bring together a fragmented health data landscape.

They will receive investment from the UKRI Medical Research Council (MRC) and the National Institute for Health and Care Research (NIHR).

One of the schemes, the Open Psychiatry Project, will bring together diverse datasets on how genes, cells and molecules impact mental health conditions.

A joined-up data landscape

The information will be presented on an interactive website and will offer summaries of potential biomarkers, drug targets, and treatments.

It will help to accelerate scientific discovery, commercial development, and patient involvement in research.

Difficulties accessing and integrating data stored across different platforms and secure environments mean it is challenging to assess how these biomarkers affect mental health.

A new approach

This project allows researchers to analyse data across multiple secure environments without moving or exposing sensitive health or genetic information, ensuring privacy while enabling powerful new insights.

This has been made possible by using privacy-preserving data federation technology.

People with lived experience will be invited to co-develop the website’s design and content, including an accessible ‘second skin’ interface tailored to non-specialist users to boost accessibility for patients.

Bringing together fragmented data

Professor Patrick Chinnery, Executive Chair of the Medical Research Council, said:

UK biomedical and health data is currently fragmented and inaccessible to many, leading to missed opportunities in generating transformative knowledge through research that will accelerate development of life-saving drugs and improve patient care.

The projects announced today will bring together biomedical and health data in a number of critically important areas, such as mental health and complex surgical conditions in children, and enhance existing services, tools and standards to create a stimulating research environment that will benefit many.

Professor Lucy Chappell, Chief Scientific Adviser to the Department of Health and Social Care and Chief Executive of the NIHR, said:

The NIHR and the Medical Research Council are leading the way in ensuring advances in data and research lead to improved care for mental health conditions. The Open Psychiatry project will help achieve the government’s ambition for world-class biomedical and health research and innovation.

This data platform will help researchers identify more precise and effective interventions, resulting in faster access to new treatments and better support for patients and their families.

Fulfilling commitments

The investments announced today will contribute towards a harmonised data ecosystem for researchers.

This echoes MRC’s and NIHR’s priorities in building the underpinning infrastructure and digital capabilities needed for world-class biomedical and health research and innovation.

It will also ensure that the UK’s rich health data assets are used responsibly to maximise benefits for people across the country.

The projects announced today will further the government’s ambition to make health data more accessible through its Health Data Research Service.

Further projects being announced today

DataSHIELD

A next-generation open-source software (DataSHIELD) will be integrated into a network of NHS Secure Data Environments (SDEs) across the North of England.

These regional SDEs have been set up to handle patient data safely and securely, but methods are required to enable data analysis across them.

DataSHIELD addresses this with the capability to conduct the privacy preserving federated analysis across SDEs, without physically moving or sharing patient data between them.

Researchers will be able to conduct analysis across regions securely, ensuring variations in the local populations are taken into account in new interventions derived from the data.

Developing new data-sharing tools

Secure, federated infrastructure will be established in partnership with cross-organisation data governance models.

This enables researchers to safely access, analyse and leverage data from multiple providers across the UK, without compromising privacy or security.

This project will redefine how health and administrative data is shared across national and regional providers, leading to scientific discoveries that could only be achieved through greater access to data.

Broadening the impact of prior research

Building upon the existing Children’s Surgery Outcome Reporting programme, information about children’s health, treatments, quality of life and educational outcomes will be integrated and stored at an NHS SDE.

This will create a unified, England-wide dataset that will support research into improving the health and wellbeing of children with complex surgical conditions.

The impact of this data resource will be demonstrated through a study of Necrotising Enterocolitis, a condition affecting premature infants.

It will improve understanding on the optimal timings of surgical interventions and how chances of survival post-operation could be improved.

This resource has the potential to answer questions about a range of conditions that are currently unanswerable due to the small scale of existing datasets, including:

Hirschsprung’s disease
gastroschisis
congenital diaphragmatic hernia
oesophageal atresia

This project has the potential to revolutionise the way clinicians are able to deliver evidence-based care for children in the UK.

It will ensure that high quality, nuanced, clinically meaningful data can be collected during routine clinical practice.

Scaling INSIGHT

INSIGHT, the world’s largest ophthalmic imaging bioresource, from Moorfields Eye Hospital will be scaled across a wider range of NHS sites to create a transformative national resource for clinical research.

It will serve to improve treatment and care for patients and foster innovation in eye health.

This initiative links genomic data with ophthalmic imaging and clinical data to unlock new discoveries about sight-threatening eye conditions.

Through oculomics, it will reveal insights into systemic diseases, such as dementia and cardiovascular disease.

Joining up diverse national datasets provides a catalyst to support AI-assisted drug discovery and advance personalised treatment, ultimately reducing the burden of disease in the UK and globally.

Further information

The Open Psychiatry Project: a co-produced web interface and platform for mental health omic data and federated data analysis

This project is led by Dr Mary-Ellen Lynall at the University of Cambridge.

The team includes collaborators from:

European Molecular Biology Laboratory’s European Bioinformatics Institute (EMBL-EBI)
Cambridgeshire and Peterborough NHS Foundation Trust
the University of Edinburgh
Swansea University
Health Innovation East
Bitfount
researchers with lived experience

The investment is £2,311,368.

FedN: A Federated North

This project is led by Rebecca Wilson at the University of Liverpool, and is a collaboration across Northern England that includes:

the Institute of Population Health
University of Liverpool
Bradford Teaching Hospitals NHS Foundation Trust
Lancashire Teaching Hospitals NHS Foundation Trust

It has specialist input from Tufts Medical Center, Boston, Massachusetts.

The investment is £2,869,495.

Federated Data Science UK (FEDS UK)

This project is led by Simon Thompson at Swansea University.

The investment is £3,747,425.

Developing the digital architecture required to facilitate high quality children’s surgical research from within the NHS SDE network

This project is led by Benjamin Allin and Professor Marian Knight at the University of Oxford.