For Jim Jenkins, health research is all about the patients. We sat down with Jim to hear how to build an effective researcher-patient partnership, and why having patient perspectives at the governing level of organizations is so important.
You’ve been a Patient Partner since 2014. How did you first become involved with the Maritime SPOR SUPPORT Unit (MSSU)?
I’ve always been involved in different organizations and sat on executive boards. I was the Chairman of the PEI Arthritis Society, and when my time there ended, I thought to myself, “What else am I going to do?”. I happened to hear about Patient Partner opportunities with the MSSU and thought it would be interesting, so I applied. Next thing you know I was involved!
How are you involved in patient-oriented research?
It keeps getting busier! When I first got involved with the MSSU, they had a project researching interprovincial travel to see how many people would actually leave PEI for medical care. I got involved in that project, along with the Small Area Variation project on the island.
I’ve also been active in the governance of the MSSU. Initially, I was part of the MSSU Oversight Committee, but then moved on to the MSSU Executive Committee.* I wanted to be on a committee that is able to make significant changes, so it’s great that I’ve ended up here. Through this committee work, my involvement with the MSSU picked up and I got to know more of the team. I’ve gone to every summit and workshop--and even attended a training to become a Patient-Oriented Research trainer. I’m also involved with the Canadian Institutes of Health (CIHR) Advisory Committee—so I’m keeping busy.
You mentioned your work with various governance committees. Why do you think it’s important to have Patient Partners represented at the governance level?
I think that’s where patients should be. We have to be where the real decisions are made, because our approach is going to help the system so much. I like being part of the MSSU Executive Committee because it gives me the opportunity to speak with the people who are actually making decisions. It’s also important, though, that when we are at that governance level that we have something to say. We don’t want to just talk and hold up the conversation! It’s very important that we’re at that top level to be a part of the decision-making process.
What do patient perspectives bring to research?
Well, when it comes down to it, it’s all about us [the patients]. If researchers are working on something that doesn’t help the patient – why are they doing it? In my opinion, patients should be one of the major players in research. What shocks me the most when I attend meetings with other Patient Partners is the people in attendance. Every single person there is incredibly educated with impressive backgrounds and experiences, and we have the ability to solve issues within the health care system. We are a fantastic resource for researchers because we have so much expertise to offer. We can help them to focus in on where they should be looking in their research. It can be an adjustment for researchers to start working with Patient Partners, but it can be such a benefit to them. There has to be a part of the research that is driven by us.
What advice would you give to researchers on how to engage patients in research?
It always comes down to having good questions. I would suggest meeting with Patient Partners face-to-face and having a conversation—ask us questions, find out our concerns and determine how we can really help. It’s also important for us to understand that too. What are we going to be doing? How are we going to be involved? It’s a two-way street. No matter what project is being worked on, there is always a spot for us—big or small. We’re there to assist in the research. We want to work together with researchers and create good partnerships.
* The MSSU Oversight Committee governed and supported MSSU operations until these functions were taken over by the MSSU Executive Committee.
Jim Jenkins, B.Sc., A.Sc. has been an MSSU Patient Partner since 2014. Jim has more than ten years of experience with the Canadian health care system as a caregiver for family members and as a patient with osteoarthritis, heart failure and diabetes. Jim is also a Past Chairman of the PEI Arthritis Society, and a current member of the MSSU Executive Committee. In his free time, Jim enjoys cycling, golfing, and life on the beautiful Prince Edward Island.