Working with researchers workshop

Our third workshop of 2016 introduced patient groups to the ways they can work with researchers.

The ultimate aim of rare disease patient groups and charities is to find a cure for their conditions. Research holds the key for the future of millions of patients and their families; it is hope for the future. And patient groups and charities play a critical role in ensuring this research takes place and is appropriate to patient needs.

However, when you are starting out with a patient group, it can be difficult to see how you can fit into the research process and how to go about supporting research. To this end, we at Findacure organised our eleventh training workshop on the topic of how rare disease patient groups can work with researchers this past Friday.

The event was opened by Flóra Raffai, our Executive Director, who provided a brief overview of Findacure and our work building the rare disease community to drive research and develop treatments.

Sara Ellis - Head of Member Engagement and Communications, AMRC

The first speaker of the workshop was Dr Sara Ellis from the Association of Medical Research Charities (AMRC), who introduced the concept of peer review and how patient groups can utilise peer review to make sure they support the best possible science. Sara stressed that while patients and advocates are often experts in their own conditions, they will not be experts on specific research projects or the latest research processes. As a result, it is important for patient groups to seek independent advice to review research projects to ensure they support the projects most appropriate to their research aims. Sara also outlined some key principles of peer review and developing a charity research strategy.

Heather Band - Scientific Officer, BDFA

We then heard our first case study of the afternoon, from Heather Band at the Batten Disease Family Association (BDFA). Heather outlined the challenges of Batten disease and the research strategy BDFA had to develop to try and address the different research priorities of patients. She stressed that even those patient groups that only have a few thousand pounds to give to research can have a large impact, specifically by supplementing university funding for PhD students or by funding an ‘expert day’ to bring together researchers and promote new collaborations.

Prof David White - Cavernoma Alliance UK

After a short break of hot drinks and snacks, we came together again to listen to our second case study from Prof David White at Cavernoma Alliance UK (CAUK). David shared CAUK’s experience developing a research strategy using the ‘James Lind Alliance Priority Setting Partnership’ process. This process saw the CAUK team consult with patients, clinicians, and other charities to identify the ‘unknown unknowns’ about cavernomas to understand what top research priorities need to be for the charity. The benefit of developing such a strategy is to truly understand what is important to the community, develop new clinical contacts, and create impetus for researchers to answer the questions.

Dr Jutta Roth - Oxford Rare Disease Initiative (ORDI)

Our final presentation was from Dr Jutta Roth at the Oxford Rare Disease Initiative. Jutta presented from the researcher perspective, stressing that patient groups bring significant value to research projects. Patients can create new collaborations and provide expertise on patient needs and patient experiences. Jutta also introduced the Oxford Rare Disease Initiative, a new network to bring together the 250 researchers at the University of Oxford and the Oxford University Hospitals Foundation Trust that work on over 300 rare diseases.

The day finished with a panel discussion session and a bit more networking. We would like to thank all our fantastic speakers and delegates for joining us, as well as White & Case LLP for the lovely venue and catering.