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

Abstract

BackgroundGrounded 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.MethodsPROUD 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.ResultsFrom 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.ConclusionThe 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.

Harnessing the Power of Community-Based Participatory Research: Examining Knowledge, Action, and Consciousness in the PROUD Study

“…The study recognizes that community members themselves are experts in the risk environments that they experience. As Lazarus et al (2014) highlighted, "People who use drugs can play a critical role as they are best able to identify the needs of a community that outsiders often know little about" (p. 2).…”

“…The CAC is composed of eight individuals who self-identify as having lived experience with drug use, three allied frontline support workers and three ex-officio representatives from organizations working to improve the health and rights of Ottawa's drug-using communities (Lazarus et al, 2014). The CAC has been meeting since May 2012 to design and carry out the CBPR research project.…”

“…The rate of HIV infection in Ottawa remains high, therefore it is critical to work with the communities of people who use drugs to better understand the environments of risk that lead to an increased burden of HIV infection (Lazarus et al, 2014).…”

“…The CAC also participated in ongoing trainings, including a week of skill building in September 2012 and participate in regular meetings. CAC meetings are facilitated by CAC members, alongside the academic researchers and study coordinators (Lazarus et al, 2014). The first major activity of the committee was to develop the survey instrument in partnership with a group of academic researchers.…”

“…Applicants completed an application form describing both their experiences with drug use and their interest in the PROUD project and 21 were selected to participate in an interview conducted by a peer and an academic researcher. Fourteen applicants were then selected to join the CAC (Lazarus et al, 2014).…”