"They Don't Know Me, Except That I'm Crazy": Psychiatric Patients' Perceptions of Research Participation and Stigma

The authors sought to identify barriers to participation in psychiatric research, especially for members of racial-ethnic minority groups, and applied a community engagement model to identify strategies to improve trust in science and research participation among individuals with psychiatric or substance use disorders.

Using the Bridging Research, Accurate Information, and Dialogue (BRAID) model as a framework, the authors conducted 10 cofacilitated conversation circles with 15 adults with psychiatric or substance use disorder diagnoses across three clinical and community-based sites in New York. Thematic analysis was used to identify key barriers to research participation and community-informed strategies for engagement.

Participants described a deep mistrust of psychiatric research and behavioral health care that was rooted in histories of harm, a lack of shared decision making, and provider stigma. Stigma and discrimination-particularly during emergency and pain-related visits-were pervasive and compounded by participants' racial-ethnic, economic, and diagnostic groups. Participants endorsed the conversation circles as safe, empowering spaces.

Lack of trust, stigma, and discrimination continue to deter minoritized patients' engagement in psychiatric research. Community-driven models, such as BRAID, offer a promising pathway to rebuild trust; amplify patients' voices; and promote ethical, equitable research and services.