On this page, we present researchers’ and patients’ perspectives on the impact that partnerships have on research itself. Participants told us that engaging patients does influence research in a variety of ways. For example, it makes the research process and its outcomes more relevant to patients, and engagement early on can help identify priorities for new knowledge that matter most to patients and their families. Additionally, the involvement of patient partners can help researchers think in new and different ways when approaching research. We also heard from several participants that partnerships improve communication about the research so that the information is understandable in forms that meet peoples’ needs, for instance, in pamphlets or information guides. Last, there was some reflection about how much of an impact partnerships actually have on research.
Feel free to jump to the following sections:
- The impact of partnerships on research projects and outcomes
- Experiential Knowledge: a different way of knowing
- Meaningful and effective communication
- Some limits of patient engagement
The impact of partnerships on research projects and outcomes
Participants told us that engaging patients in research helps to identify what matters to patients. In this sense, it clarifies what the right priorities of research are and should be.
Impact on Research
I think we have a lot of assumptions as researchers, and certainly, my experience as a patient has challenged some of those assumptions, like, you know, thinking that perhaps, “This is the way we’re going to do it,” and being respectful of, “Well, actually, that may not work from a patient perspective.” And, “Well, is that actually an important question that the patient has?” So, you will never
In our interviews, participants talked about ‘priorities’ in two different ways – about the subject of the research, and about how to conduct the day-to-day work of research, such as meeting with participants, developing data collection tools, or clarifying the outcomes that matter and how to measure them.
Impact on Research
So as I just mentioned in my previous comment, I think having patients and caregivers involved on the team helped us sort of ground the projects in a realistic perspective from their views, not just from ours as researchers or as healthcare professionals that were also on the team. It helps us reaffirm why we're doing the project and the perspectives of patients and family.
Impact on Research
So that we have more impact that way in sort of - in ensuri
One researcher mentioned that the patient partner was helpful in finding a funder who would support the research project priorities and advance the project forward.
Impact on Research
Certainly for funding. It was Julie’s [patients’ mother] fundraising efforts which helped to secure funds to push the project forward. It was through MitoCanada, and so it was very – it was something which, again, we would not have necessarily anticipated that the family would be so much engaged in fundraising efforts to keep pushing the project forward.
Experiential Knowledge: a different way of knowing
Participants also discussed that having patients engaged in research as partners creates new ways of knowing and thinking not only about research, but also about health, illness and improving healthcare services.
Impact on Research
Yeah. It’s very difficult and I think it just didn’t happen on its own. The basic premise, as I say always, the basic premise is that patients have experience living the knowledge. I mean knowledge -- no, I mean knowledge about their disease through experience. They’ve experienced managing it. They’ve experienced the symptoms, whatever, so they have that.
Participants also told us that learning from others’ experiences helps project teams to go beyond simply gathering information or contributing to ‘theoretical’ knowledge. Incorporating lived experience within research leads to a unique way of knowing about the world, but also helps to build a different kind of ‘motor’ for generating knowledge, and helps us to think or imagine health problems differently. Engaging patients provides access to experiences that helps researchers think ‘outside the box’ which can improve research.
Impact on Research
Oh I think hugely, particularly youth and families they can think outside the box, right? Everyone else is inside the box. Service providers, they're mostly inside the box and because they are literally working within the system the box being they work for the system. And so it's not that they can't. It's just naturally more difficult.
Impact on Research
And maybe in about a year into the project, the request came whether or not they would be allowed to visit the lab. And they were interested in seeing sort of what’s being done in the lab and speaking also with the people who were involved. And so at the time, the group which was involved in this specific project was about seven people.
Meaningful and effective communication
Participants told us that patient partners helped improve research material developed for patients in language that was more appropriate, understandable and respectful (e.g. recruitment pamphlets, posters) or research documents (e.g. consent forms, questionnaires).
As well, participants recognized that good communication is key to helping patients understand the implications of participating in research as participants or subjects. People we interviewed explained how patient partners can improve research material by ensuring that the language used is clear and simple and written in such a way that it is less likely to cause any unnecessary stress or fear. For example, they had observed that patient partners helped researchers revise research material to be less intimidating, which contributed to helping patients feel more at ease when being asked questions. When research participants feel more at ease, they are more likely to be responsive and share their experiences.
Impact on Research
Interviewer: So tell me a bit more of what you felt were the benefits overall? Did the project take any directions that you wouldn't have anticipated or were you able to do different things than you might have anticipated?
Impact on Research
And we wanted to make sure that we conveyed that information to all potential surgical patients in a way that would make sense to them, like gave them the relevant information they needed to know, it could be easily understood.
Impact on Research
This most recent research survey I was involved with, one of the researchers came to me recently and they just thanked me because I brought up a lot of different issues that generally they’re not thought about, or how to say something better or make a person be relaxed.
Some limits of patient engagement
While most participants agreed that patient engagement is valuable, some also felt that the jury is still out on whether and how engaging patients in research makes a difference. Many participants indicated that we need a better understanding of the impact of patient engagement on research and its outcomes.
Impact on Research
And I think, and this is based on the premise that including voice, patients’ voice, in research will improve it. And that’s not really proven yet, solidly. I mean I know there are researchers who are very insistent on that, that we have proof, but we don’t. What we’re seeing is that it changes research for sure. It’s not the same anymore, but it... Does it make it better? We don’t know.
Impact on Research
Rhene: I don’t know that we had a really big impact on the health care study.
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