Attending a research funding committee: a patient insight partner’s view
Written by Debra, patient insight partner
On the 23 May 2018, Debra was a guest member on one of our research funding subcommittees, where researchers and patient insight partners collaborate to decide on funding for the most relevant and scientifically excellent projects. She shares her experience with us below.
Thankfully the meeting was in Chesterfield and I was able to drive there as I live locally. I had reviewed the research proposals some weeks before, and compared to other reviews that I had previously done, these were a little more involved as I had to include the rebuttal comments after peer review and present an overview for the panel. The lead from Arthritis Research UK had previously confirmed that I was positioned to speak before lunch as my illness makes me fatigued later in the day.
The Chair introduced everybody and specifically welcomed me to the group expressing that if I had any questions I had to ask and that my contribution would be paramount as a patient that lives with musculoskeletal illnesses day to day. Each proposal was presented and then discussed, and the Chair asked us to score each one. At the end of the session the scores were collated and ranked so we could discuss the outcomes and confirm that we were all happy with the results.
Initially I felt quite intimidated with all the doctors, professors and medical people in the room but everyone made conversation and made me feel valued and included within the group. Discussions were open, honest and informal, the Chair was very clear to explain why certain people kept leaving the room when they were 'conflicted' for the proposal being reviewed at the time. If any of us had any comments we raised our hand and the Chair enabled us to speak in turn. There were three other patient insight partners present on this subcommittee so I had a few familiar faces. My opinion was included on all of the proposals and on more than one occasion I was thanked for attending and for giving my time – a perspective that can only be given by somebody who lives with a musculoskeletal illness.
I am so honoured to be involved with Arthritis Research UK and think it is amazing they are giving patients voices at all levels of the charity. Thank you for enabling me to have a purpose in life and taking some control back from the pain.