By Amanda Lucas, Programme Director, Imperial College Health Partners

Published: 22 May 2019

Just one year after its launch, North West London’s Discover research register has nearly 4000 patients signed up and continues to grow. Programme Director, Amanda Lucas leads the team behind these numbers. In this post Amanda shares what drives her team and what the future holds for this valuable research resource.

Discover is not just a story of data; it is the story of the people behind that data. In the past year we have reached out to thousands of patients across North West London and asked them be part of our register, willing to be approached to participate in potentially life-saving medical research. The response has been fantastic – with nearly 4000 willing members signed up, and more joining every day, we are already showing unprecedented potential for a variety of researchers.  

This highly valuable research register was created, and is managed, by our dedicated team at Imperial College Health Partners, the designated Academic Health Science Network (AHSN) for North West London, in partnership with the Collaboration of North West London CCGs.

As well as a large pool of willing research participants, the value of Discover for health researchers comes from one of the most powerful datasets in the UK – the NWL Whole Systems Integrated Care (WSIC) database. Discover is a gateway to this linked NHS health and social care de-identified data for 2.3 million NWL patients. Researchers that gain approved access to generate research using this data through the Discover Research Access Group can work with our analysts to garner insights from an incredibly rich data resource to run both prospective and retrospective studies to generate real world evidence.    

To date we have approved access to 20 research projects made up of NHS, academic, charity and industry partners that aim to:

• investigate the impact on patient pathways across primary and secondary care of a new cardiac monitoring device aiming at early diagnosis of atrial fibrillation
• explore whether opportunities to intervene in alcoholism in patients suffering from liver disease have been missed
• assess the impact of a new app on patient activation for women with breast cancer
• look at the correlation between asthma / COPD and depression, anxiety and smoking
• investigate the predictors of hospitalisation for end of life cancer patients.

ICHP’s position as a membership organisation, much like the AMRC enables us to help develop effective research collaborations across the NHS, academia and industry.  In all our research the voice and experience of patients is important, and we would be very happy to hear from AMRC members interested in research collaborations in the future.

We already work closely with medical charities to help ensure the research we support meets the needs of our population and in becoming a member of the AMRC we are enthusiastic about building on this commitment.   

I also hope that a rich linked dataset for 2.3 million patients in North West London can be a new and valuable resource for your organisations as you look to gain a deeper understanding and work together towards our common goal of improving healthcare services and finding new ways to treat and prevent illness and diseases.  The linkage of primary and secondary care data is unique and can help inform understanding of multimorbidity and health economic burden.

Finally, as new members to the AMRC, the Discover team and I look forward to meeting you in person at AMRC events, hearing about your vital work, and creating future collaborations on life saving health research.

Visit the Discover website to read more and find out how both patients and researchers can get involved.