When I first started working alongside researchers, I often wondered: Do they really want to hear my perspective, or am I just here to check a box? A new study caught my eye because it tested whether patients, caregivers, peer support specialists, and scientists could come together as true partners in shaping research.
The study, published in the Journal of Participatory Medicine (Fortuna et al., 2024), examined a three-month online training program called the Partnership Academy, which focuses on community-based participatory research (CBPR). You can read the full paper here: https://jopm.jmir.org/2024/1/e48707
Why This Matters to People with Chronic Pain
1. Our voices shape better research.
The training demonstrated that when individuals with lived experience are provided with tools and a seat at the table, the quality of research partnerships improves. That means chronic pain patients can influence studies, so they reflect the reality of flare-ups, fatigue, mobility struggles, and access to care.
2. Remote participation opens doors.
Because the training was done online, people could participate from home. For those of us living with chronic pain, avoiding long travel or day-long conferences makes participation possible.
3. Partnership is more than tokenism.
The study reported stronger engagement and higher-quality collaborations after training. Real outcomes followed—four grant proposals and one published article within three months. That’s not symbolic; that’s impact.
4. Distrust became visible.
Interestingly, distrust in the medical system increased after the training. At first glance, this looks negative, but it’s essential. Talking openly about medical errors, dismissive care, and system failures brings buried concerns into the open. For chronic pain patients, that awareness can fuel changes in how researchers and clinicians approach trust.
What It Means for Us
This study tells me that people living with chronic pain are not just “participants” in research—we can be co-creators. With the proper training, tools, and respect, our expertise from lived experience is just as valuable as any clinical credential. Remote programs like this show how inclusion can move from theory to practice.
It also reminds me that raising our voices may make us more aware of systemic problems, but that’s a necessary step toward solutions. Building trust requires honesty, and sometimes honesty stings.
For me, the takeaway is clear: we belong at the table, and research is better when we’re there.
Source: Fortuna KL, Bohm A, Lebby S, Holden K, Agic B, Cosco TD, Walker R. Examining the Feasibility, Acceptability, and Effectiveness of Remote Training on Community-Based Participatory Research: Single-Arm Pre-Post Pilot Study. Journal of Participatory Medicine. 2024;16:e48707. doi:10.2196/48707. Full text: https://jopm.jmir.org/2024/1/e48707
Acknowledgment: This article was developed with the assistance of ChatGPT.
Disclaimer: The views, positions, and recommendations expressed in this article are based on my personal experiences and independent research. They are solely my own and do not necessarily reflect the views, policies, or positions of the American Chronic Pain Association (ACPA).