Rachel Savage, PhD
I was writing a proposal on applying an intersectional approach to study the complexity of loneliness. I knew it was critical to get input from persons with lived experience (PWLE) who have intersecting identities that may be implicated in experiencing greater loneliness. While I was experienced in collaborating with community partners and knowledge users on grant proposals, engaging directly with PWLE on grant proposals was new to me
I contacted our patient engagement lead at Women’s College Hospital, Victoria Forster, for advice. Initially, I was hesitant as the grant was due in six weeks, and I had assumed there was not enough time to engage PWLE meaningfully. Given the timing, Victoria suggested conducting a one-time focus group with PWLE over Zoom. We discussed recruitment strategies, from exploring the experience advisor program at WCH to the community engagement program at the Institute for Clinical Evaluative Services (ICES). Once we had a plan, Victoria helped me draft a recruitment email, consulted on honorariums and provided advice on how to engage PWLE in the grant. She advised that I send the proposal along with a two-minute video explaining the grant at a high level and a list of questions I was hoping to ask during the focus group. Victoria joined me during the focus group to help address any technical difficulties and to help manage the chat, which was extremely helpful.
The focus group was so illuminating and helpful! Six PWLE provided input that helped me prioritize both variable selection for my proposed quantitative data analysis and interview topics for my proposed qualitative interviews, and they shared their perspectives on knowledge translation and how to reach our target population meaningfully. It was also incredibly useful to hear about their experiences with loneliness and how these feelings were connected to their identities. We had a rich discussion, and in the end, I was excited to learn that the PWLE wanted to stay involved in the research if funded. It was a wonderful and unexpected output of this engagement. In my grant proposal, I included a few sentences on my engagement to develop the proposal and how the input was incorporated into the grant. Victoria reviewed this section of my grant, which was also helpful.
Overall, this was an incredibly positive experience. This will become standard practice for me as it was so valuable.