James Lind Alliance: Identifying the Top 10 Canadian Research Priorities for Fibromyalgia – a Patient’s Perspective
by Trudy Flynn, IMHA Patient Advocate and Research Ambassador
As a Health Care Professional with a 20-year history as both a patient with fibromyalgia and as a caregiver for a daughter with fibromyalgia, I was invited to take part in the James Lind Alliance Fibromyalgia Priority Setting Partnership with IMHA in 2014. I jumped at the chance. The James Lind Alliance (JLA) is a non-profit making initiative established in 2004. It brings patients, caregivers and clinicians together in Priority Setting Partnerships (PSPs) to identify the Top 10 priorities, or unanswered questions, about the effects of treatments. It aims to make sure that health research funders are aware of the issues that matter most to patients and clinicians.
At last, I felt that someone valued my opinion about my disease and wanted my help to drive future research for fibromyalgia. Could this finally open a door for researchers to discover something to make living with fibromyalgia easier? Fibromyalgia is characterized by widespread chronic muscle, bone and joint pain accompanied by fatigue, sleep, memory, mood and allergy issues. Women are estimated to be four to nine times more likely to develop the disease than men. With more than 900,000 Canadians (approximately 3% of the population) suffering with fibromyalgia, there is a tremendous need for more research into this disease.
The James Lind Alliance Process
A patient-centric approach is a process where healthcare systems can establish partnerships among practitioners, patients, and their families to align decisions with patients' wants, needs, and preferences. My experience with the James Lind Alliance Process was excellent, but I did see opportunities to make this process even better and more patient-centric. To maximize patient oriented input during James Lind Alliance procedures, the process can and should start at the very first step: during the participant selection stage. To my knowledge, there was no patient / caregiver input at this phase.
The telephone conference stage was very well moderated and productive. From my perspective, a face-to-face workshop at the beginning of the process to get to know each other first, then follow with the rest of the meetings by telephone would have worked better. I sometimes had difficulty following the telephone dialogue at this stage as clinicians did most of the talking. I felt that anything I had to say was not important enough to break into the conversation. This is an essential stage in the process, and I don’t feel that I, as an average patient, contributed as much as I should have.
Data analysis is a tricky piece of the puzzle and very time consuming. While I realize that patient involvement at this level might be more difficult, there should be a patient advocate involved in the process to ensure transparency.
The next step: working one-on-one (patient advocate to professional) to prioritize and work on the wording of the research questions worked very well and I truly felt like a valued member of the team.
The final stage of the Priority Setting Partnership (PSP) workshop enables patients, caregivers and clinicians to agree on the order of priority of a shortlist of unanswered questions. This was the best part of this entire process. The main focus of the workshop is to agree on the Top 10 priorities for future research and it marks the beginning of the next stage of work for a PSP. The Guidebook contains more advice on how PSPs can formulate research questions and work with researchers and research funders. Please see the Top 10 Priorities for Fibromyalgia (Canada) identified through this James Lind Alliance process. I left the workshop feeling that I had fully contributed, and that we had made great gains in having patients steer where research is headed.
On reflection, I was surprised how far apart patients and clinicians were in setting priorities for fibromyalgia research. The Clinicians leaned towards pharmaceutical research while patients were more interested in self-care and self-directed lifestyle changes - especially how those changes could affect our symptoms. This indicated to me that there are gaps between what clinicians think and what patients actually need and want.
There needs to be a partnership that carries on past this priority setting process to have patients work with researchers on topics that patients and clinicians deem important to be truly patient-centric care. Most importantly, more research on fibromyalgia is urgently needed. No studies of significance have been submitted for funding since the priorities were set in 2014. I am grateful for the opportunity to have been part of the James Lind Alliance Priority Setting Partnership. The experience educated and encouraged me to become involved in other aspects of patient advocacy.
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