By Joletta Belton
In September of 2023 we held the first ever PxP Conference. PxP stands for For Patients by Patients, and the inaugural conference was all about Partnering to Make Research Stronger. It was an honor to be a part of our international steering committee, made up entirely of people with lived experience of various health conditions. The PxP Conference was truly and meaningfully led by people with lived experience, and was fully supported by the Canadian Institute of Health Research’s Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA).
For this first PxP conference, the Steering Committee chose the theme Partnering to Make Research Stronger. The steering committee wanted to recognize the invaluable knowledge and contributions that people living with pain or a particular health condition bring to health research. When people with lived experience are involved, supported, and collaborative partners in the work, their lived knowledge and expertise broadens and deepens our understanding of the health condition being researched, as well as what can be done about it. As we saw throughout the conference, people living with pain and various health conditions have contributed across the research spectrum, from establishing meaningful research agendas and relevant research questions to developing innovative solutions and products and effectively disseminating and implementing knowledge in the real world.
But how do we do it? How do we partner together to make research stronger? We are all at different points along our patient partnership trajectories. Some of us are just learning about patient and public partnerships in research and want to be more involved and some have been involved in research but are still just getting started. Some are trainees and some are seasoned researchers who have worked on many research teams and projects. Some are even leading research teams and projects!
The PxP steering committee wanted to ensure we had sessions for everyone, no matter where they were in their own patient partnership trajectory. We kicked off the conference with an overview of patient and public involvement and ended with the amplifying research findings. Two apt bookends of our conference that included everything from mentoring to challenges, self-research to researcher perspectives, including all voices to leading the way, and learning from leaders in this space who provided specific resources, which can also be found at the PxP resource hub.
It was an honor to be on the steering committee, and a tremendous learning experience to participate in the conference as an attendee, host, and moderator. The sheer magnitude of the expertise and experience across the three days is immeasurable. One thing that really struck me is that no matter our diagnosis, so many of our experiences are similar, no matter where we are in the world. It is clear that health research is not meeting our needs in ways that are effective and sustainable. It is equally clear that involving people with lived experience of whatever is being studied can make research stronger, more meaningful, more relevant, and have a much greater impact on the people most affected.
And I've been lucky to work with several patient partners now in advancing our research program and in giving us new ideas and new ways of doing our work…Even when we're working with animal models, we can still draw on lived experience to inform research." - Nader Ghasemlou
The PxP conference can serve as an exemplar of how to meaningfully involve - through shared power - people with lived experience of pain or health conditions. The PxP website now also houses links to many free resources, shared by the steering committee and our esteemed speakers. Many of these resources were new to me and have already proved invaluable!
While the conference was designed by and for patient partners, it is relevant to anyone who is interested in patient and public involvement in health research, including clinicians, researchers, caregivers, policymakers, funders, health systems administrators, educators, and public health officials. In order to facilitate such work in the health research and care community, PxP will soon be publishing peer-reviewed articles on our processes - the nuts and bolts of how the conference came together and how we worked collaboratively to bring it to fruition. We will also be sharing more blog posts and resources, so be sure to bookmark the PxP webpage and sign up for the newsletter!