The Importance of Patient-Researcher Partnerships
Transcript
So, my name is Julie Drury. I am the mom of a medically fragile child who, together we navigated the healthcare system for close to a decade. She suffered from a rare, originally undiagnosed disease, and then a disease that was diagnosed but was still an ultra-rare form of mitochondrial disease. So, I’m very active in patient partnership and patient engagement and leadership. I bring that passion because of my lived experience with my daughter.
My position now is as the Chair of the Minister’s Patient and Family Advisory Council for Ontario. So, I’m an advisor to the Ministry of Health and Long Term Care as well as to the Minister. I chair a council of over 15 Ontarians, as well as about 1000 patient-partners across the province, to offer the perspective of lived experience of patients, families, and caregivers, and to share that knowledge and wisdom back with the healthcare system.
I have some personal lived experience with my daughter. I think it’s really interesting how that came about, and it was a relationship between one of our clinicians, our metabolics physician, and a researcher who was doing some basic research into mitochondrial function. My daughter had a mitochondrial disease that was recessive genetic in nature. So, that relationship came about sort of serendipitously. I walked over to his office and said, “I understand you’re doing this research. Our clinician had made us aware. I’d like to know if there’s something I can do to share information about my daughter, or share information about her particular mitochondrial disease and dysfunction.” I think what was really interesting was, at the very beginning I’m sure this researcher was, “what is this mom going to have to offer?” We actually go out and speak now about the relationship and the trust that we’ve built.
Building trust came through conversations. It came through mutual respect. That mutual respect built around me sharing my experiences and this researcher being open about his experiences, him being open about what he was interested in investigating, but also me being able to share with him what I felt was important to investigate, and what would change our life.
So, supporting engagement and partnership in research starts at a level of, first of all identifying who those patient and family caregivers are that want to partner. So, we’ve got to be really public about the opportunity. I think we’ve got a really great baseline to start with, with the introduction of SPOR, the strategy for patient-oriented research from CIHR, but I think we want to open up that opportunity to more people. I’m not sure everyone’s aware of that.
The second thing is that not everyone is sure what they can contribute to research. So, training, and I’ll use that word loosely, training patient partners and training researchers at the same time in the same room as to what it means to partner in research. What is that we’re here to do together, what does that look like?
So, that education, that training, and then ongoing support. Peer support, so patient advisors who have been involved in research for quite some time, coaching other patient advisors or supporting them, but also peer support amongst researchers.
So, I love that you’re grounding this in lived experience. I mean, that is the fundamental value of patient engagement, patient partnership, and patient leadership. It’s all about the fact that we’re looking at things from a different perspective, or from a different lens which is the lived experience. So, sharing that as a resource to other practitioners or researchers or patient partners who might want to be involved in research, it’s highly valuable. I’m not sure if it’s been done anywhere else. The other thing that’s wonderful about what you’re doing is that it’s an online resource. So, at your own time, at your own pace, the resource is available to you on your smartphone or your laptop, wherever it might be. I think sometimes we rely a little bit on training that’s done in person or bringing people into conferences. Again, we’ve got to think through the time and the availability of patient partners and also supporting diversity and equity.
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