People with lived experience of schizophrenia and related conditions want more than a role as research participants. They want a meaningful say in deciding which questions are studied, how studies are conducted and how findings are shared, according to a 2026 German interview study.
The study involved 26 one-on-one interviews: 13 experts by experience and 13 inpatients diagnosed with schizophrenia or schizoaffective disorder. The expert group included 12 peer support workers and one researcher with lived experience. Paul Nickel and Moritz Wigand of Ulm University conducted the interviews.
What participants wanted studied
Participants valued medication and brain research, but they did not place those topics above research on therapy, relationships and everyday care. Five people specifically asked for more research into medication side effects, and almost half discussed medication. Most of those who raised the subject described side effects as troublesome.
Basic brain science was rarely raised spontaneously. Participants did not describe it as more important than therapy or social research. This did not mean they rejected basic science. One expert said it was important and necessary while also arguing that people with lived experience should help identify research priorities.
The findings fit with broader analyses cited by the researchers. An analysis of papers in 10 highly ranked psychiatry journals found that neurobiological research, particularly genetic and animal studies, became more prominent after 1999, while social and psychological themes remained underrepresented across the years studied.
Another comparison found a gap between priorities and commercial trial activity. Drugs, vaccines and biologicals made up 18% of interventions prioritized by patients and clinicians, compared with 86% of interventions in commercial trials. Non-drug approaches represented 59% of patient and clinician priorities but 3% of commercial trial interventions.
From consultation to shared decision-making
Participants wanted involvement throughout the research process, from choosing questions to communicating results. They criticized forms of consultation that appeared symbolic, such as questionnaires with a small free-text box when respondents could not be sure their answers would enter the analysis.
They also described concerns about being studied without being heard, predetermined outcomes, short-lived projects and findings that did not match their accounts of what happened. Some participants initially emphasized the need for formal scientific training. Others argued that peer support workers could conduct or take part in research, and participants supported training people receiving care to participate more fully.
The researchers recommended shared priority setting and treating people with lived experience as full members of research teams. They also called for greater openness about researchers’ own psychiatric histories and for researchers to treat participants with more respect, particularly in qualitative studies.
A broader view of mental health research
Participants supported multidisciplinary or “multiperspective” teams that could include philosophy and sociology alongside psychiatry and psychology. They generally described psychiatry as more humane than it had been decades earlier, pointing to lower medication doses, less sedation, fewer restraints, greater patient autonomy and improved relationships with staff.
At the same time, they felt that change in psychiatry and the use of research on hospital wards were moving too slowly. The study therefore presents involvement not simply as a matter of representation, but as a way to connect research priorities with the realities of care.
An Australian analysis cited by the researchers similarly found that people with lived experience viewed their experience as a critical ingredient of mental health research and wanted it to help set agendas, not only supply participants.
What the study can and cannot show
Nickel and Wigand used semistructured interviews covering 18 themes and analyzed the transcripts through qualitative content analysis. Research was one of those themes. The design was intended to identify issues that mattered to participants and understand why; it was not designed to measure how common each view is.
The analysis relied mostly on the expert interviews. Those interviews averaged 71 minutes, compared with 43 minutes for patients, and patient perspectives were added where they agreed with or differed from the experts. The researchers said that patients gave shorter answers on the abstract topic of research.
The study had a small German sample. Patients came from one hospital and were likely more severely ill than people receiving outpatient care. Experts were recruited by word of mouth through four initial contacts, which may have produced participants with similar views. Only one lived-experience researcher reviewed the interview guide, and lived-experience researchers had limited involvement in the study itself.
These limits mean the findings cannot establish how widely the views are shared or whether they would apply to other countries and care systems. They do, however, provide a detailed account of why participants wanted a stronger role in shaping schizophrenia research and what meaningful involvement could look like.
AI tools were used to assist with the preparation of this article under our editorial standards.
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