Mental health problems have a huge impact on the UK’s health, wealth and wellbeing. An estimated one in six of us are affected by mental illness each year in the UK and it costs the economy £70-100 billion annually as a consequence of lost productivity, time off work, social benefits and health care.
Mental health and illness stem from a multidimensional interplay of biological, psychological, social and environmental factors which influence risk and resilience to illness and response to treatment.
The UK has several rich and unique data assets – including well-phenotyped population and patient cohorts, NHS health records and routinely collected administrative data. Integrating biological, clinical, epidemiological, lifestyle-related, social, educational, environmental and other data sources (e.g. apps, wearables) offers the potential to accelerate the development of new treatments and approaches for:
- mental health problems
- facilitate biomarker and target discovery
- deliver insights into the aetiology of mental ill-health
- increase our understanding of the complex interactions between physical and mental health
- inform more effective and targeted early intervention and prevention strategies for mental illness.
The development of a coordinated and integrated informatics resource for mental health research was identified as a key priority within the 2017 MRC Strategy for Lifelong Mental Health (PDF, 761KB). In 2018 the MRC funded nine leading Universities from across the UK to develop methods, systems, infrastructure and insight that would help researchers to harness the power of data for mental health research and inform the establishment of an integrated resource. Funding for these Data Pathfinder awards, which totalled £10M, was secured as part of the governments National Productivity Investment Fund (NPIF). As the Data Pathfinder initiative comes to completion, we are looking to build on the learnings that have emerged and enter the next phase of development.
Health Data Research UK (HDR UK) was established in 2017 and is the national institute for health data science. It aims to unite the UK’s health data to enable discoveries that improve people’s lives. This call is for funding to establish a mental health data research hub in partnership with HDR UK, providing complementary activities to the existing portfolio of Health Data Research hubs.
Embedding the mental health data research hub within the established infrastructure of HDR UK provides a number of benefits, not least the access to a range of relevant expertise and the participation in development of standardised processes to improve safe access to health data and data linkages. The hub will adopt the HDR UK brand, offering a trustworthy approach for the public that is recognised by industry and at a national level in policy development. Partnership with other hubs in the network will also be facilitated, providing opportunities to share best practice and deliver collaborative projects.
About the UK Health Data Research Alliance & Innovation Gateway
The UK Health Data Research Alliance was established in February 2019.
The purpose of the Alliance is to bring together and facilitate partnership working across NHS organisations and other health data custodians, leading to an ethical, consistent approach to data provision and public engagement.
The Alliance coordinates the identification and adoption of standardised tools, techniques, conventions and technologies for the use of healthcare data for research and innovation in a trustworthy way.
The members agree, with public participation, best practice and standards for governance and privacy. The Alliance is working closely with NHSX, NHS Digital and NHS bodies in the devolved nations to support alignment of policy for health data research.
The Data custodian organisations that contribute to the Mental Health Data Hub will be required to become members of the Alliance, adhering to Alliance principles of participation. In this way, membership of the Alliance will continue to grow, and the new data assets produced by the Hub will be discoverable and accessible through the common UK Health Data Research Innovation Gateway (the ‘Gateway’).
The UK Health Data Research Innovation Gateway provides a common access point for industry, academia and NHS for discovering, accessing, linking and analysing data for research and innovation. This includes national aggregated data (from existing Alliance members) and new curated data provided by Hubs and other members of the Alliance.
The Gateway supports interoperability, common standards and secure data provision across the Hubs. The Gateway contains no personal identifiable information (PII). All PII is retained by the Data custodians to ensure General Data Protection Regulation compliance
The Gateway is underpinned by a consistent governance framework. It links with Safe Havens (also known as Trusted Research Environments) which provide secure access to de-identified data for further analysis of sensitive data within the NHS. It provides opportunities for research and innovation, in a safe and ethical manner, that protects privacy and creates a range of possibilities for linking this data with others to develop even greater insight.
The Mental Health Data Hub will be funded directly through MRC, however it is expected to align with the overall vision of Health Data Research UK and to become part of its wider network. This involves aligning with the Principles of Participation (PDF, 258KB) and contributing to the Alliance and the Gateway. This approach builds on the Digital Innovation Hub scheme funded by MRC through the Industrial Strategy Challenge Fund.
The newly established Mental Health Data Hub will be expected to work collaboratively with the other Health Data Research Hubs in a single UK-wide network and with other components of the relevant national health data landscape.