Increasing participation of people with thought disorder in clinical research.

backgroundThought disorder (TD) is a core feature of severe mental illnesses such as schizophrenia, characterized by disruptions in speech, language, and communication. People with TD face unique barriers that hinder their involvement in research, both as participants and as partners. Their systematic underrepresentation in psychiatric research is driven by pervasive assumptions about their decisional capacity, willingness to participate, and ability to engage in research. This perpetuates a biased evidence base, likely hindering the therapeutic progress toward addressing this core problem.

methodsThis review, informed by professional (clinical and research) and lived (bottom-up and phenomenological) experience of TD, examines how flawed assumptions regarding capacity, engagement, and participatory abilities serve as active barriers to inclusion.

resultsWe argue for a shift toward supported inclusion through tailored capacity assessments, enhanced informed consent procedures, targeted training of research personnel, and systemic institutional practices. Incorporating lived experiences of those with TD as research partners is integral to this approach, fostering co-production of research that is more valid, inclusive, and applicable.

conclusionsWithout these inclusion-focused changes, the development of treatments for TD is likely to have very slow progress and a critical segment of the severely unwell population will continue to be underrepresented from the scientific process, undermining both the utility and generalizability of psychiatric research.