Thought Disorder and Mental Health Research: Toward a More Inclusive Approach
Why People Living with Thought Disorder Are Excluded from Research
Between 50% and 70% of individuals living with psychosis experience some form of Thought Disorder (TD), yet they remain significantly underrepresented in clinical trials and mental health research.
Thought Disorder can manifest as disorganized speech or reduced communication abilities. Despite the prevalence and impact of these symptoms, many individuals with TD are excluded from research studies before a formal assessment of their capacity to participate is even conducted.
This reality is often described as “assumptive exclusion”: individuals are sidelined because it is assumed they will be unable to provide consent, communicate effectively, or participate adequately in a study. Beyond the ethical concerns, this exclusion creates a scientific gap. When those most affected are absent from the data, findings become less representative of real-world clinical populations, limiting the development of interventions that truly meet patients’ needs.
How Can Mental Health Research Become More Inclusive?
Our latest article, published in European Psychiatry, calls for a shift in how inclusion is approached in mental health research. Rather than automatically excluding individuals due to cognitive or communication challenges, the study promotes a model of “supported inclusion,” where research methods are tailored to participants’ specific needs.
In practice, this includes:
- More accessible consent procedures;
- The use of plain language and visual aids;
- Allowing additional time for consent discussions;
- Specialized training for mental health research teams.
The findings demonstrate that with appropriate adaptations, such as simplified forms and flexible processes,many people living with Thought Disorder can actively and meaningfully participate in research.
The goal is to produce science that reflects the lived realities of mental health while improving care, clinical interventions, and policy. This perspective aligns with a broader movement recognizing people with lived experience not just as subjects, but as partners in knowledge production.
DIALOG and LEI: Advancing Inclusive Mental Health Research
These issues are central to the DIALOG Project and our Lived Experience Initiative (LEI) team.
Led by Dr. Lena Palaniyappan, coordinated by Ranjini Garani within the DISCOURSE in Psychosis network, the DIALOG Project integrates individuals with lived experience of Thought Disorder into key stages of the scientific process that help shape study designs, consent tools, and research priorities.
This vision is echoed by the LEI, led by Tosh Watson, which promotes the active integration of people with lived experience into the Centre’s broader research and clinical initiatives. By placing lived experience at the heart of the scientific process, DIALOG and LEI are helping develop mental health research that is more accessible, human-centered, and representative of the challenges faced by young people and those living with psychotic disorders.
Lena Palaniyappan
MD, PhD
Centre Director
Ranjini Garani
Research Coordinator, DIALOG project
Tosh Watson
FT Lived Experience Coordinator