Health Data Research UK (HDR UK), the Medical Research Council (MRC) and Versus Arthritis have today announced a new Hub called Alleviate: APDP Pain Research Data Hub (Alleviate Hub); advancing necessary research into chronic pain.
Chronic pain is a major unmet public health challenge, with little known about its exact cause. General pain is the body’s normal reaction to an injury or condition, but for some people, pain can continue long after an injury or condition has healed. When pain lasts for 3 to 6 months or more, it is referred to as chronic pain and can cause significant difficulty for those living with it. Many pain-related datasets from research studies already exist across the UK; however, prior to now, there has been no national approach to coordinating and managing this data. The HDR UK led Alleviate Hub will address this challenge by safely and ethically bringing together pain-related data from diverse UK research cohorts, providing researchers and innovators with the ability to link pain-related health data.
The Alleviate Hub will maximise the value of chronic pain data from diverse sources, making these Findable, Accessible, Interoperable and Reusable (‘FAIR’) for researchers and innovators to discover and request access to via the Health Data Research Innovation Gateway (the Gateway) - a common entry point to discover and request access to an array of UK health-related datasets. Researchers and innovators will be able to apply to use this data to help address complex questions about chronic pain, diagnosis, treatment and, to ultimately, improve the physical and mental wellbeing of those living with chronic pain.
The Alleviate Hub joins an existing network of eight HDR UK led Health Data Research Hubs, which have recently passed a key milestone in demonstrating improvements to the UK’s health data. The Hub is in partnership with University of Dundee, University of Nottingham, King’s College London, Imperial College London, University of Oxford, University of Bath, and Cambridge Institute for Medical Research. It is funded by MRC-UKRI and Versus Arthritis, and forms part of the larger £24M initiative called Advanced Pain Discovery Platform (APDP) - delivered in partnership through MRC, ESRC, BBSRC, Versus Arthritis and Eli Lilly.
Anthony Chuter, patient representative for Alleviate, said:
“As someone who has lived with and in pain for 30 years and experienced first-hand the devastating impact that pain can have on someone’s life, this initiative is really exciting. Researchers need access to data about people who are living with and in pain and Alleviate will enable them to find the data and help link it to other health records. I am so pleased to be involved with this and to have a chance to make a difference. I’m looking forward to connecting other people who live with pain to this initiative to make sure that our perspectives are listened to and shape what’s ok and what’s not ok around the use of our data.”
Ben Gordon, Executive Director: Hubs and Data Improvement at HDR UK, said:
“We are delighted to announce that the Alleviate Hub will be joining our network of Health Data Research Hubs, enabling us to improve data and research services, as well as the lives of those who are living with chronic pain. The Hub will bring together expertise from multiple domains to support research that will improve people's lives. By making this data discoverable via the Gateway, researchers can more easily see what's available, and patients can see how data this being used.”
Emily Jefferson, Hub Director for Alleviate, said:
“Chronic pain is a major unmet global public health challenge, affecting around 1 in 5 people and causing more disability than any other condition, anywhere in the world. This new UK-wide pain data hub will deliver world class health data infrastructure and services for pain research, guided by leading experts in pain research and in partnership with the NHS, the APDP consortia, industry partners. By working with people who have lived experience of chronic pain means we will be able to use the data for research that matters most to them.”
Link to Alleviate Hub: https://bit.ly/34nsPOA
Link to published news piece: https://bit.ly/2Sx63RA