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
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.
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.
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.
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.
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.
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.
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.