The use of a participatory patient engagement research project to meaningfully engage those with lived experience of diabetes and homelessness

Abstract

AbstractIntroductionParticipatory research is a study method that engages patient partners in research programs from study design through to completion. It has seldom been used in diabetes health services research. Our objectives were to describe the process and challenges of conducting a patient-engagement project and to highlight the experiences of patient participants and academic researchers.Research Design & MethodsWe recruited PWLEH and diabetes in Toronto, Canada to be patient partners. Group members were asked to commit to attending biweekly meetings. We undertook two major research projects: Concept mapping to choose a research focus; and photovoice to explore accessing healthy food while homeless. We used a convergent mixed methods design to evaluate their experience.ResultsA diverse group of 8 PWLEH had an average attendance of 82% over 21 meetings – despite this success, we encountered a number of challenges to conducting this research. Group members reported that participation improved their ability to be self-advocates in their diabetes care and provided them with tangible skills and social benefits. Group members stated that they valued being involved in all aspects of the research, in particular knowledge translation activities, including advocating for nutritious food at shelters; presenting to stakeholders; and meeting with policy makers.ConclusionsThe use of participatory patient engagement research methods enables academic researchers to support community members in pursuing research that is pertinent to them and which has a positive impact. In our study, group members contributed in meaningful ways and also valued the experience.What is already known about this subject?Patient oriented research is important to public health research as it helps with the development of relevant interventions and knowledge translation.Participatory research is a form of research that maximally involves patients in all phases of the research.Participatory research has rarely been used in research on diabetes and diabetes-related interventions.What are the new findings?Patient engagement is important for studies involving socially disadvantaged populations with diabetes.Community members involved in research contribute substantially to research projects but also find the experience to be enriching and valuable.How might these results change the focus of research or clinical practice?Those who conduct research with and develop programs to provide diabetes care, especially to socially disadvantaged populations, should involve community members through all phases of the process to ensure the intervention is maximally useful for patients.