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.
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.
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.”
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
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.
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.
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.
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).