Establishing a community-based participatory research partnership among people who use drugs in Ottawa: the PROUD cohort study

BACKGROUND: Grounded in a community-based participatory research (CBPR) framework, the PROUD (Participatory Research in Ottawa: Understanding Drugs) Study aims to better understand HIV risk and prevalence among people who use drugs in Ottawa, Ontario. The purpose of this paper is to describe the establishment of the PROUD research partnership. METHODS: PROUD relies on peers’ expertise stemming from their lived experience with drug use to guide all aspects of this CBPR project. A Community Advisory Committee (CAC), comprised of eight people with lived experience, three allies and three ex-officio members, has been meeting since May 2012 to oversee all aspects of the project. Eleven medical students from the University of Ottawa were recruited to work alongside the committee. Training was provided on CBPR; HIV and harm reduction; and administering HIV point-of-care (POC) tests so that the CAC can play a key role in research design, data collection, analysis, and knowledge translation activities. RESULTS: From March-December 2013, the study enrolled 858 participants who use drugs (defined as anyone who has injected or smoked drugs other than marijuana in the last 12 months) into a prospective cohort study. Participants completed a one-time questionnaire administered by a trained peer or medical student, who then administered an HIV POC test. Recruitment, interviews and testing occurred in both the fixed research site and various community settings across Ottawa. With consent, prospective follow-up will occur through linkages to health care records available through the Institute for Clinical and Evaluation Sciences. CONCLUSION: The PROUD Study meaningfully engaged the communities of people who use drugs in Ottawa through the formation of the CAC, the training of peers as community-based researchers, and integrated KTE throughout the research project. This project successfully supported skill development across the team and empowered people with drug use experience to take on leadership roles, ensuring that this research process will promote change at the local level. The CBPR methods developed in this study provide important insights for future research projects with people who use drugs in other settings.