Table 2

Group member and academic investigator reflections

Academic researchersCommunity group members
DJTC: Being a diabetologist with a clinical practice focused on caring for those who face social vulnerabilities (many of whom have been homeless), I thought that I had a good sense of the types of barriers my patients face and what their priorities would be. However, doing this patient-led project taught me how absolutely critical it is to meaningfully engage those with lived experience, as their priorities are likely to be different than what a provider might anticipate them to be. The findings from this study continue to inform my ongoing research and advocacy efforts. Given the centrality of access to healthy foods raised by this research, I am creating new programs and initiatives with the aim of addressing food insecurity in patients with diabetes.54 Also, as the coordination of healthcare visits was raised by the group, I am now pursuing a new line of research to pilot test a comprehensive diabetes care model in those experiencing homelessness to reduce this burden for patients similar to those in our group.ML: Information about diabetes from the CDAC group facilitators deepened my understanding of how my diet and level of activity have a direct impact on my health outcomes. In talking with other group members I learned of helpful services that I could utilize, such as food banks with access to fresh produce and drop-ins serving nutritious food. More so, listening to group members share about their personal journeys with diabetes and homelessness, I began to understand how one can exacerbate the other.
In learning about different research methods and contributing photos and writing about my experiences, I came to understand that my contribution to the study was legitimate. Brainstorming as a group with my peers on a research question demonstrated to me that the facilitators were interested in addressing issues that mattered to myself and others who have had a similar journey. In November 2019 I was able to attend and present at the Canadian Alliance to End Homelessness conference. I also had the opportunity to share my experience with the CDAC in an interview with a reporter.55 Talking to professionals allowed me to bring attention to issues that are important to me and demonstrated that my lived experience is valuable to people who were in a position to help others like myself.
RBC: I have been working in homelessness policy and research for 15 years. Though I have never been a front-line service provider, I have worked with clients in focus groups, advocacy groups, and during research events. My participation in this community-based research project taught me that researchers and policy makers need to work with individuals with lived experience of homelessness on an individual, face-to-face level, regardless of their role or position. The lessons I learned from CDAC members through sharing the nuances of their lived experience are indispensable. Despite reading academic literature and having a pulse on the world of homelessness, I found the work that the group did to be deeply moving– and still do every time I revisit it. The development of the group’s research priorities and questions serves as a constant reminder that academics are not necessarily on the same page as the those with lived experience in this regard. Academics will never know what clients/patients prioritize unless they engage with the community and enable individuals to partner meaningfully in research endeavors.AD: At 56 I found myself homeless and fighting diabetes. That’s when I joined an amazing group of people, the Clients with Diabetes Action Committee. I was given a voice from them. The group was made up of all walks of life but we shared one common ground, we all wanted to be involved in a cause that touched our lives, it made me feel that my story was important. We were involved in choosing the topics that were important to us and being able to share our stories with the other members of the committee. It was an empowering experience knowing that I was not alone.
Since getting involved with the CDAC, I have been able to share my experience on two podcasts56 57 and in November 2019 I was given the opportunity to present our research at two national conferences, one on diabetes and one on homelessness. Being able to share my experience with other researchers and doctors, ignited a fire within me. There I also had the pleasure of meeting the federal politician from my local constituency and was able to share my experience with him. He was interested in listening to my story. When I returned to Toronto he followed up with me. He directed me to other politicians and before COVID he was helping me to bring our Photo Exhibit to City Hall to tell our story. This experience have me a voice that has kept me focused on fighting for my rights. I will never let the light go out.
SWH: I have worked in homelessness-related health research for over 20 years and have led a number of projects related to diabetes. Being involved with this project, however, was a unique experience. Having individuals who have lived with homelessness and diabetes to lead the direction of the research provided new insights from a first-hand perspective and yielded meaningful results. On the heels of this patient-led program of research, my team has launched a community-based group to continue bringing the voices of people with lived experience of homelessness to research priorities at our centre. We will also use the insights from this study to help guide our homeless-focused primary care teams as they work with patients with diabetes. In this way, the efforts of the Clients with Diabetes Action Committee live on.MAD: My experience with the CDAC group was challenging and educational. Within the classroom sharing our experiences as individuals without appropriate housing and chronic health history was quite triggering. We all had very challenging disclosures and at times there were behaviours. I really enjoyed attending the various venues outside of the classroom. When we did our photo exhibits, this was a great opportunity to have my voice heard. I met many people that were unaware of what individuals without appropriate housing are faced with or the many different reasons we all had for being on the streets as an adult or youth. The people I spoke with were unaware that youths deal with violence and abusive situations and some adults are graduates and are employed. This was my comfort level, speaking with total strangers that I would never see again, this was a lot better than engaging with my classmates that I saw weekly.
I also enjoyed when we had guest speakers; a representative from Diabetes Canada spoke to our group and was open to a Q&A after. I spoke about my own experiences coping with type 2 diabetes and I got a chance to be featured in a national magazine 58 and a national newspaper.59 I really wished that I had more opportunities to connect with policy makers. I believe that policy makers have no idea the barriers they create when they implement guidelines and rules. I am sure they have the statistics but it seems that they really don't care.
  • CDAC, Clients with Diabetes Action Committee.