Program Is Finding Ways To Engage Patient Partners In Diabetes Research
There is a growing understanding that the best people to guide research into chronic conditions are those living with the condition.
This knowledge has inspired the Diabetes Action Canada Training and Mentoring Research Program to find ways to encourage researchers and health-care professionals to do just that.
“Our goal is to offer training in patient-oriented research to our members,” said Michelle Murray, coordinator for the Diabetes Action Canada Training and Mentoring Program. “We also offer funding to new trainees (including internship, mentorship and post-doctoral fellowship competitions), to encourage them to do patient-oriented research.”
They want patient partners to be part of the research – not just as subjects, but as project collaborators.
“They are experts in their condition, they live with it 24 hours a day, they’ve lived with it for many years,” said Murray.
The patient partners collaborate in different ways, she explains, including project design, data management, governance, and more, depending on their interests and skills. The program also brings together experts in different areas, including indigenous, francophone and immigrant groups.
“It makes these projects more relevant to people who have diabetes,” said Murray. “They have a say in what they think should be studied, researched. They can say this is something we are really worried about.”
She notes that patients have always been involved in research on some level, such as filling out surveys or taking part in clinical trials. But this is different, as patient partners have an opportunity to see how the research project evolves.
However, connecting researchers and patient partners isn’t always easy. It takes time to build relationships.
“What we’re trying to do with the training that we offer to researchers, clinicians and patients is explain the dynamic and how it can work,” said Murray. “It can be complex, as you’re dealing with different people with different backgrounds.”
To make it work, people need to feel that they really are collaborating and engaged in a project.
“Patient partners, they want to be heard and, more than that, they want to feel that what they are saying or doing is going to contribute to the research and better health for them and their families,” said Murray.
While the research community is still learning how to make these relationships work, progress is being made. The program is offering more training sessions and has been able to engage more people, with patient partners facilitating some of the sessions.
“We always have an evaluation after these training sessions, so every training session builds on the last one,” she said.
On top of the success they have had with training, the team is also pleased with how people have responded to the funding competitions it offers trainees.
Murray, along with one of the program co-leads, Mathieu Bélanger, is based in Moncton. The other co-lead, André Carpentier, is in Sherbrooke, Quebec. The rest of the team are located across the country.
The Training and Mentoring Research Program is one of 11 that is part of the Diabetes Action Canada Network. It is funded by the Canadian Institute of Health Research as part of the Strategy for Patient-Oriented Research. They are one of seven networks that received funding. They are currently in year four of a five-year funding term.
“Diabetes Action Canada is evaluating itself and we have begun our own evaluation for the program. The response we have from the people that have participated in our training or our funding competitions, it’s very positive,” said Murray. “Those are all good indications that we are on the right track. Obviously, there is always room for improvement, but we’re on the right track, so we’re really happy with that.”
This story is sponsored by the New Brunswick Health Research Foundation (NBHRF).
Banner picture: left side, front to back: André Gaudreau, Patient Partner; André Carpentier, DAC Training and Mentoring Program Co-lead; Howard English, Patient Partner. Right side, front to back: Olivia Drescher, DAC Patient Engagement Program Coordinator; Michelle Murray, DAC Training and Mentoring Program Coordinator; Mathieu Bélanger, DAC Training and Mentoring Program Co-lead. Image: submitted.