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Increasing participation of people with thought disorder in clinical research
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DOI：10.1192/j.eurpsy.2026.12211.png)
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Abstract
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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.
Keywords:
clinical research inclusion
lived experience
severe mental illness
thought disorder
psychosis
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