Meeting Summary – October 2021: Experiences of Drug User Activists as Researchers

Feb 23, 2022 | Meeting Summary

Article

Simon C, Brothers S, Strichartz K, Coulter A, Voyles N, Herdlein A, & Vincent L. (2021). We are the researched, the researchers, and the discounted: The experiences of drug user activists as researchers. International Journal of Drug Policy. https://doi.org/10.1016/j.drugpo.2021.103364

Article Summary

This article is a commentary from activists in Urban Survivors Union, the United States national drug users union, focusing on the interactions between academic researchers and community members. The authors described multiple challenges that exist in these interactions, including power imbalances and structural issues. The authors also detailed their own experiences with community-based participatory research and how it often does not engage the community in the ways that it should. Community driven research is then described as research questions that are posed in collaboration between academic researchers and people in the community, not posed by academic researchers alone.

The authors conclude their commentary with multiple recommendations for moving toward community driven research instead of community-based participatory research. Some of the prioritized recommendations include: 1) research including community-initiated research questions, 2) directly impacted persons having priority hiring in low threshold positions, 3) research projects providing immediate benefit(s) to the community, 4) institutional review boards both protecting and empowering subject populations, and 5) community review boards providing ethical decision-making regarding research activities.

Key Themes and Discussion Summary

Benefits of including people with lived experience in research design and planning

Group attendees discussed the benefits of including people with lived experience in the research process. It was emphasized that those with lived experience understand how members of the community are impacted by the issues being researched.

Reframing participants as consultants

It was noted in discussion that community members should be reframed as consultants in research studies as opposed to participants. Group attendees asserted that lived experience expertise is valuable to addressing research concerns and framing research questions.

Challenges trusting researchers

The group discussed their concerns that the community will not fully trust researchers until the power imbalance between community members and researchers is acknowledged and corrected.

The importance of academic knowledge and lived experience

Attendees of the group noted that academic knowledge is often valued more than the knowledge people gain from their own lived experiences. Lived experiences provide valuable insights that academic knowledge does not always offer.

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