Increasing participation of people with thought disorder in clinical research

Palaniyappan, Lena, Baillet, Sylvain, Bambini, Valentina, Barou-Laforie, Etienne, Bosia, Marta, Harrison, Neil ORCID: https://orcid.org/0000-0002-9584-3769 and Singh, Krish D. ORCID: https://orcid.org/0000-0002-3094-2475 2026. Increasing participation of people with thought disorder in clinical research. European Psychiatry 69 (1) , e56. 10.1192/j.eurpsy.2026.12211

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Abstract

Background Thought 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. Methods This 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. Results We 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. Conclusions Without 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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Schools > Medicine Schools > Psychology Research Institutes & Centres > Cardiff University Brain Research Imaging Centre (CUBRIC)
Additional Information:	Full author list can be see here - https://doi.org/10.1192/j.eurpsy.2026.12211
Publisher:	Royal College of Psychiatrists
ISSN:	0924-9338
Date of First Compliant Deposit:	5 May 2026
Date of Acceptance:	14 March 2026
Last Modified:	01 Jul 2026 13:47
URI:	https://orca.cardiff.ac.uk/id/eprint/186766

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