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Innovative UK data hub to enable research and innovation to tackle mental illness

A new Hub will provide data resources for mental health research and innovation

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Hub

Health Data Research UK (HDR UK) and the Medical Research Council (MRC) have today announced a new Hub to provide data resources for mental health research and innovation. The Hub is led by researchers from King’s College London and Swansea University and will improve the discoverability and usability of diverse data sources for research to help improve the lives of people with mental health problems.

The Hub is called DATAMIND and aims to improve the use of big data for mental health research by providing data services, tools and expertise to a wide range of users. DATAMIND will operate across the four nations of the UK, bringing together expertise from the NHS, universities, charities, research institutes and industry. The Hub is led by Professor Ann John at Swansea University and Professor Rob Stewart, Clinical and Population Informatics Lead at NIHR Maudsley Biomedical Research Centre.

Mental health affects almost everyone at some point in their lives and, to varying degrees, is the biggest cause of ill-health for people living in the UK. People living with a mental illness are less likely to take part in or to remain in usual types of research studies and may also be actively excluded. This means that much of what we know about mental health is not based on the very people who are worst affected. However, the UK has some of the best data in the world, which can be used in research to understand how to prevent mental ill-health and maintain and improve people's lives. Real-world data offers powerful opportunities to overcome these issues.

The DATAMIND Hub will maximise the value of this data by safely and securely bringing together data from diverse sources, including health records, schools and administrative data, charity data, research trials, genomics, longitudinal studies and cohort data. DATAMIND will make these data discoverable through the UK Health Data Research Innovation Gateway (HDR Innovation Gateway) and will enable researchers use the data to help address complex questions about mental health, as well as improve our understanding of what works best to improve outcomes at a personalised and population level. This has the potential to improve diagnosis, treatment and, ultimately, improve psychological wellbeing.

Involving the public, patients and people with lived experience of mental health problems is a critical part of the DATAMIND hub. Integrated at the outset and throughout the Hub’s activities, this insight will inform the safe and responsible use of mental health data and accelerate opportunities for impact on patients and the public.

DATAMIND is funded by a £2M investment from the MRC. It joins an established network of Health Data Research Hubs, led by HDR UK and funded through UKRI’s Industry Strategy Challenge Fund, which aim to maximise insights and innovations from health data. These hubs have made significant impacts in data improvement and have supported the research response to COVID-19 in areas including infection rates, vaccine rollout, and understanding the impact of COVID-19 on specific disease areas.

“The establishment of DATAMIND at this time is a clear recognition of the importance of mental health and of the huge potential to harness datasets to enable the inclusion of as many people as possible within research to help inform mental health services. Clinical informatics is a cornerstone of mental health research at the NIHR Maudsley BRC and we are delighted to be part of DATAMIND’s collaboration between academics, industry, NHS, charities, patients and the public which will help ensure that the UK continues to stay at the forefront of this innovative field of research.” – Professor Matthew Hotopf, CBE, Director of the NIHR Maudsley BRC and Vice-Dean of Research at the IoPPN, King’s College London

Professor Ann John, Co-Director of DATAMIND, said:

“We’re really excited about DATAMIND. By working together with the public, patients, researchers, industry and the NHS we will transform both our understanding of mental health and the lives of people experiencing mental health problems. We will create a Hub where researchers and others can find and use mental health data to benefit patients and the public and improve care.

We know how important it is that people understand how their data is used and feel comfortable, which is why we will work closely with the public, patients, and those with personal experience to ensure these open conversations happen and that the highest standards of data security and privacy are met.”

Professor Rob Stewart, Co-Director of DATAMIND and Clinical and Population Informatics Lead at NIHR Maudsley BRC, said:

“The UK has a genuine opportunity to be world-leading in mental health data science, and DATAMIND is an exciting step along the way. I'm very pleased that I and colleagues at King’s College London and the NIHR Maudsley Biomedical Research Centre will have the chance to play a leading role in this initiative, having spent the last 15 years developing Clinical Record Interactive Search (CRIS), CogStack and other related data resources which are helping transform mental healthcare. With so many other equivalent resources and expert groups around the country, it is a pleasure to have the chance to come together and make a difference.”

Dr Sarah Markham, patient and public member of the DATAMIND Independent Oversight Board, said:

"DATAMIND has a significant potential to improve the lives of both mental health patients and the wider community of the UK. This is an incredibly exciting innovation. Through my involvement I hope to help embed the principles of patient and public involvement and co-production in data linkage, sharing and use, and help to support and empower mental health patients in the context of data-driven research."

For more information, please contact Serena Rianjongdee, Communications and Engagement Officer

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Matthew Hotopf

Matthew Hotopf

IoPPN Vice Dean (Research)