In general, participants anticipated that partnerships would improve in quality and quantity over time - particularly in terms of processes related to engagement and in terms of helping to focus on patients’ needs and priorities. They also noted the recent growth in the number of opportunities for funding related to partnership. Participants saw patient engagement in research as a relatively new approach in comparison to traditional research and highlighted the need to be able to measure the impact of these efforts in the future.
Feel free to jump to the following sections:
Process
Impact
Methods
Funding
Dissemination
Process
Overall, participants felt that the process of patient engagement would become more ‘automatic’ in the future, and one researcher described the current stage of patient engagement as one with ‘growing pains’. Some envisioned that there would be more guidelines, resources and more scrutiny of the patient partner role. Participants also expressed hope that in the future patient engagement would be more transparent, democratic and diverse with a deeper level of sharing, interest and recognition for this approach.
Looking forward
My hope - I don't think it's going to go backwards, like I think it's here to stay. I guess my hope is that I really would like to see more diversity. I'd like to see more myths dispelled about what it takes to get involved so that people who we really need to hear from are really heard - I think that's really important.
One researcher mentioned that developing a relationship with your institution is helpful throughout the process. For example, Janet said “Also I find, as I work I do communicate a lot with the institutions where I'm based and I find relationships there, as I keep them in informed and work with them and push the boundaries or ask them to do different things, I find that it gets easier to work with them. They sort of come to anticipate our needs and that in the work and so that's helpful.”
Impact
Researchers spoke about the importance of being able to demonstrate the impact of patient engagement in the future. Or, as expressed by one participant, …”we need to demonstrate why pa
Looking forward
Well you know we did a think-tank in early February, the Executive, and we see like in the next two years as we complete our five-year mandate, we're looking at okay where do we need to get to in terms of patient engagement and building a community of patient-oriented researchers that's value-added.
Looking forward
Yeah definitely if we can show in some way that it makes a difference in terms of the quality of research being done, for sure. If we show also so that it makes a difference in the quality of life of Canadians or people, if we can sort of make a link, if they’re more involved in research, they’ll be better cared for and they will take better care of themselves, you know, make a difference.
Methods
Certain researchers made a distinction between traditional research methods and how patient engagement approaches and research based on real-life struggles contribute to the development of new approaches. Or, in other words, participants felt that traditional paradigms for research are being challenged by patient engagement approaches as well as research based on lived experiences.
Looking forward
Interviewer: And what do you think has changed for you now that you’ve gotten involved in these types of partnerships?
Looking forward
Interviewer: And do you talk to your students in class about this?
Looking forward
Policy makers. Yeah, I think, I mean the prevalence of disease in many parts of the world, in Canada as well, in different populations, and I'm thinking specifically about the Indigenous population -- it's completely off the map. It's unacceptable.
In addition, patient engagement may contribute to a different research focus or agenda, as community members may perceive different types of gaps versus the researchers. Several patients expressed a hope that the level of patient participation will increase or that involvement would improve at an earlier stage of research. One patient described how health policy should help position patients at the top of the researchers’ pyramid, and that everybody else should help the patient stay on top.
Funding
With regards to funding, researchers noted that there were more calls for funding and that funding agencies were more open to patient engagement in recent years. However, researchers also expressed difficulties in the current funding climate. One patient noted that there are currently no funding mechanisms for patients to lead research and that there is a risk of disillusionment if patients are only engaged because it is a grant requirement.
Looking forward
Well, I - you know, it's a reality that there's limited funds for research period and for qualitative research it's even more difficult and more challenging to receive funding. But having said that, with the - there's a move, you know, from, you know, inpatient to ambulatory care.
Looking forward
But in general, I must say that my outlook towards research is dire. It’s becoming very difficult to conduct it. We’re living in more and more in a society where that kind of investment in something that doesn’t really return very fast, is not very politically accepted. And so funding is going to come more difficult.
Dissemination
As part of the research process, but an activity often under-resourced, Laurie brought attention to the need for more effort on the dissemination of the research results (known as knowledge translation).
Looking forward
I think you’ll see more – I see a world where patients are more involved and we’ll see more uptake of the research in the real world, right. Because that’s what they care about, right; they want – or at least I know I care about that, like, I want to see it used. So I don’t want your research to stay in a publication, you know.