Community-Engaged Research Ethics Training (CERET): developing accessible and relevant research ethics training for community-based participatory research with people with lived and living experience using illicit drugs and harm reduction workers.

BACKGROUND: Community-based participatory research (CBPR) can directly involve non-academic community members in the research process. Existing resources for research ethics training can be inaccessible to team members without an academic background and do not attend to the full spectrum of ethical issues that arise through community-engaged research practices. We detail an approach to capacity building and training in research ethics in the context of CBPR with people who use(d) illicit drugs and harm reduction workers in Vancouver's Downtown Eastside neighborhood. METHODS: A project team comprised of academic and community experts in CBPR, research ethics, and harm reduction met over five months to develop the Community-Engaged Research Ethics Training (CERET). The group distilled key principles and content from federal research ethics guidelines in Canada, and developed case examples to situate the principles in the context of research with people who use(d) illicit drugs and harm reduction workers. In addition to content related to federal ethics guidelines, the study team integrated additional content related to ethical issues that arise through community-based research, and ethical principles for research in the Downtown Eastside. Workshops were evaluated using a pre-post questionnaire with attendees. RESULTS: Over the course of six weeks in January-February 2020, we delivered three in-person workshops for twelve attendees, most of whom were onboarding as peer research assistants with a community-based research project. Workshops were structured around key principles of research ethics: respect for persons, concern for welfare, and justice. The discussion-based format we deployed allowed for the bi-directional exchange of information between facilitators and attendees. Evaluation results suggest the CERET approach was effective, and attendees gained confidence and familiarity with workshop content across learning objectives. CONCLUSIONS: The CERET initiative offers an accessible approach to fulfill institutional requirements while building capacity in research ethics for people who use(d) drugs and harm reduction workers. This approach recognizes community members as partners in ethical decision making throughout the research process and is aligned with values of CBPR. Building capacity around intrinsic and extrinsic dimensions of research ethics can prepare all study team members to attend to ethical issues that arise from CBPR.

Research 101: A process for developing local guidelines for ethical research in heavily researched communities.

BACKGROUND: Marginalized communities often attract more than their share of research. Too often, this research benefits researchers disproportionately and leaves such communities feeling exploited, misrepresented, and exhausted. The Downtown Eastside (DTES) neighborhood of Vancouver, Canada, has been the site of multiple public health epidemics related to injection drug use as well as the site of much community-led resistance and struggle that has led to the development of cutting-edge harm reduction interventions (e.g., North America's first supervised injection facility, Insite) and a strong sense of community organization. This background has made the DTES one of the most heavily researched communities in the world. Amidst ongoing experiences of unethical or disrespectful research engagement in the neighborhood, a collaboration between local academic researchers and community representatives developed to explore how we could work together to encourage more respectful, community-responsive research and discourage exploitative or disrespectful research. METHODS: We developed a series of six weekly workshops called "Research 101." These workshops brought together approximately 13 representatives from peer-based organizations in the DTES with a variety of experiences with research. Research 101 created space for community members themselves to discuss the pitfalls and potential of research in their neighborhood and to express community expectations for more ethical and respectful research. RESULTS: We summarized workshop discussions in a co-authored "Manifesto for Ethical Research in the Downtown Eastside." This document serves as a resource to empower community organizations to develop more equitable partnerships with researchers and help researchers ground their work in the principles of locally developed "community ethics." Manifesto guidelines include increased researcher transparency, community-based ethical review of projects, empowering peer researchers in meaningful roles within a research project, and taking seriously the need for reciprocity in the research exchange. CONCLUSIONS: Research 101 was a process for eliciting and presenting a local vision of "community ethics" in a heavily researched neighborhood to guide researchers and empower community organizations. Our ongoing work involves building consensus for these guidelines within the community and communicating these expectations to researchers and ethics offices at local universities. We also describe how our Research 101 process could be replicated in other heavily researched communities.