Discover – powering more effective research in North West London By Matt Cooper, Innovation Advisor, Imperial College Health Partners Published: 5 July 2018 The challenge As will be all too familiar to AMRC members, a common challenge for researchers is finding volunteers to be participants in studies. The current processes are onerous and rely on network, relationships and capacity, and this effort does not always yield the study numbers required. This can lead to individual phases, or sometimes whole studies being delayed or aborted and means we cannot always deliver improvements in our field as effectively as we want. Yet, frustratingly it is not for the want of enthusiastic participants. Many people want to contribute to health research, but don’t know where to start or who to ask. Whilst research interest groups for individual medical charities serve to raise awareness about research studies in specific conditions, it is still difficult to match individuals to studies due to a lack of insight from their medical record. The solution – creating a research-ready environment Discover, the health research platform looks to close the gap by creating a more effective ecosystem for research in North West London (NWL). It addresses both sides of the equation: patients sign up to the Discover register to be notified of research opportunities relevant to them, and researchers can search for participants who match the criteria of their studies. This provides a platform for researchers to recruit for their studies from a research-engaged cohort of patients who already match study criteria. This enables smart design and smart delivery of research. Research studies that relate to any condition can be delivered through Discover, and requirements of potential participants can range from answering surveys to having their blood tested, to testing new medical devices or phone apps, and participating in clinical trials. Any adult patients registered to a GP in the London boroughs of Brent, Ealing, Harrow, Hillingdon, Hounslow, Hammersmith & Fulham, Kensington & Chelsea or Westminster can sign up to Discover. How we use patient data to support research delivery The real power of Discover is generated through the NWL Whole Systems Integrated Care database (WSIC). WSIC contains the patient records of over 2 million people in the 8 boroughs of NWL listed above. WSIC is a unique dataset of linked, coded data from primary, acute, mental health, community and social care data enabling researchers to track complete patient journeys and associated costs. The integrated patient level data can be used to deliver retrospective, observational and real world evidence studies. This level of linked data is unparalleled in England. The Discover team can either facilitate access to the de-identified data, the Discover Register or offer support with study design and data interrogation, delivered by specialist health data analysts. Studies are approved through our Discover Research Access Group and must be run in conjunction with one of our local researchers. Our story so far Whilst continuing to grow our patient consent-to-contact register, our Discover Research Access Group has already approved our first two studies for retrospective cohort analysis using the WSIC data. Submitted by a partner university, the first of these assesses wheelchairs users aged 65 and above, exploring complexities of comorbidities and examining their conditions secondary to disability. The second, submitted by a Partner Foundation Trust in London seeks to understand whether opportunities to intervene in alcoholism in patients suffering from liver disease have been missed. Opportunities to get involved For Researchers We want to bring studies to our local area, allowing our local patients to access your latest innovations to help improve their care and quality of life. Feel free to email the Discover team at Imperial College Health Partners if you are interested in how the Discover solution could support you. For Participants Help your members access innovative research which could improve their quality of life. We would appreciate your charity’s support in helping us to recruit participants to Discover. If you, the staff, or members of your charity live in North West London and would like to sign up, it only takes a minute via our website. Context to Discover Discover was founded by Imperial College Health Partners, a partnership of NHS organisations and universities across North West London, in association with Scottish Health Research Register (SHARE). SHARE, set up 6 years ago by the Universities of Edinburgh and Dundee, has built an impressive bank of research studies and enlisted over 200,000 people as part of their contact register for research opportunities. With your collaboration, we can support you in using Discover to deliver breakthrough research, finding better ways to treat and prevent illness and disease.