We are the researched, the researchers, and the discounted: The experiences of drug user activists as researchers

In this commentary, activists from Urban Survivors Union, the United States national drug users union, discuss our experiences conducting research on methadone clinic adoption of relaxed SAMHSA guidelines during the COVID-19 epidemic. In particular, we focus on our interactions with academic researchers as a grassroots organization of criminalized people designing our own research. We describe the challenges we navigated to retain decision making powers over the research question, data analysis and interpretation, and dissemination. We find that our collaborations with academic researchers are often complicated by power imbalances and structural issues. In our experience as directly impacted people, even community based participatory research (CBPR) often sidelines us. Our eventual research approach demonstrates how our process transcends CBPR by becoming community driven research (CDR). We suggest several changes to the research process in order to propagate this model.