Le français suit / French follows
By Melody Choi
Trudy Flynn’s experience as a retired nurse, patient, and patient advocate informs her unique perspective on patient engagement in research. In this interview, she delves into her involvement with CIHR-IMHA’s Patient Engagement Research Ambassadors (PERA), the evolution of patient engagement in health research, and the establishment of Fibromyalgia Association Canada (FAC).
- What initially motivated you to become involved in patient-engagement research?
My motivation is deeply personal as my daughter developed fibromyalgia at just eight years old, even younger than I did. I’ve always been an advocate for my children, but her diagnosis intensified that drive as it impacted every part of our lives. It was always easier for me to advocate for others than for myself, and that experience fueled my commitment to seeing more dedicated research on fibromyalgia as a distinct condition.
- How did you become a Patient Engagement Research Ambassador with CIHR-IMHA?
A few years after my daughter participated in a clinical trial, I was invited based on my experience as a caregiver, patient, and medically retired nurse to join the CIHR-James Lind Alliance Adult Fibromyalgia Priority Setting Partnership in 2014. My initial involvement was remote, which I found challenging, but everything changed when we met in person in Montreal. Being around others with fibromyalgia helped me find my voice as an advocate.
What really struck me during that time was how little fibromyalgia was being researched. In 2016, I attended the Canadian Pain Summit as a patient representative from the Maritimes. I spoke up during a presentation, encouraging researchers to use more accessible language for patient partners. That moment reinforced for me that if you want change, you have to be part of it.
After that summit, a representative from IMHA approached me about becoming a Research Ambassador, and I said yes. When Dr. Karim Khan later restructured the program and launched the Patient Engagement Research Ambassadors (PERA) initiative, I applied and was selected again. The shift was significant; PERA emphasized deeper involvement throughout the research process, which aligned closely with my goals.
- From your perspective, how has patient engagement in research evolved over the years, and what do you envision for its future, especially concerning fibromyalgia research?
Since becoming a Patient Engagement Research Ambassador, I’ve seen the patient engagement landscape evolve significantly, especially with the introduction of initiatives like SPOR. I’ve worked with excellent researchers who truly value patient input, but there’s still a tendency among some to bring patients in too late in the process, which limits our impact. Tokenism remains a challenge.
A key shift I’d like to see is involving patients right from the start, when research questions are being formed. That’s when our lived experience can truly shape meaningful outcomes. I also believe patient engagement should be embedded into education systems so that future researchers understand its value early on. Passionate leadership plays a crucial role here. When leaders prioritize patient involvement, it sets the tone for meaningful engagement across the board. In Canada, much of the existing work is qualitative and repetitive as there’s not enough funding. I’d love to see more quantitative research, especially looking into potential genetic markers.
- What inspired you to establish the Fibromyalgia Association Canada, and what are the organization’s primary goals in supporting individuals living with fibromyalgia?
The idea for FAC came from a realization that there was no national organization solely dedicated to fibromyalgia. It started when I saw a post on a Nova Scotia government website claiming fibromyalgia was a psychological condition treatable by cognitive behavioral therapy alone. I tried to get it removed, reaching out to various contacts, but quickly realized there was no national association to back me up. So, with others who shared my concern, we decided to create one.
FAC’s original goal was simple: to be a hub where people with fibromyalgia felt seen and supported. Too often, fibromyalgia is treated as an add-on to other conditions like arthritis or ME, rather than recognized on its own. That invisibility motivated us to build something ourselves. There’s a real difference between fibromyalgia and general chronic pain. Our pain is unpredictable and widespread, and common pain medications often don’t work. Many, like me, also struggle with symptoms like brain fog, which led to my early retirement as a nurse.
FAC aims to change this narrative. Last summer, we applied for a planning grant to create diagnostic tools and build partnerships between doctors and patients. We’re also focused on empowering people through self-management by encouraging consistent practices like movement, nutrition, and sleep regulation. You can’t let fibromyalgia get away from you, you have to stay ahead of it.