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. Electronic supplementary material The online version of this article (10.1186/s12954-019-0315-5) contains supplementary material, which is available to authorized users.

Background: Global cases of overdose-related deaths attributed to synthetic opioids are reaching epidemic proportion in many jurisdictions. While the main focus of health agencies and the different levels of government has been to combat the cases linked to injection drug use, the deaths attributed to smoking illegal drugs have not gained the same attention. Moreover, little attention has been given to the role of people with past or current experiences of illegal drug use and how their social networks can mitigate the risk of a highly stigmatized behavior such as smoking illegal drugs. Methods: The study concerns the first social network research conducted via a community-based participatory action methodology in two distinct urban (Vancouver) and rural (Abbotsford) centers in British Columbia, Canada. The study will identify the influence of social networks on people who smoke illegal drugs (PWSID) and their adherence to interventions aimed at reducing harm. Through community consultations, members of the Vancouver Area Network of Drug Users and the British Columbia/Yukon Association of Drug War Survivors not only assisted with the design of this research project but also assisted with the data collection, management, protection and entry of demographic, and network information. Discussion: Many traditional qualitative and quantitative methods have not effectively engaged people who use drugs as researchers or collaborators due to stigma related to illegal drug use. The aim of this study is to recognize that everyone within the network of PWSID is a few steps away from harm. Therefore, we aim to reduce the harm associated with smoking of illegal drugs, especially for PWSID that are at the highest risk. At the same time, we hope that the social network research via a participatory community-based approach will mobilize PWSID in the process and offer a different method of knowledge construction from the traditional positivist approaches.

No abstract

No abstract

No abstract