A new PSY-PGx publication highlights why people with lived experience should be involved throughout the mental health research process. The paper provides practical recommendations that help researchers improve patient involvement and make mental health research more relevant, accessible and person-centred.

Patient and Public Involvement (PPI) plays an increasingly important role in health research. However, many mental health studies still do not involve people with lived experience in a meaningful way. Instead, researchers often include patients only at specific stages of a project. The publication explores how research teams can build genuine partnerships with people who have lived experience.

GAMIAN-Europe’s role in PSY-PGx

PSY-PGx is an EU-funded Horizon 2020 project that aims to improve psychiatric treatment by using pharmacogenetics to personalise medication and reduce the current trial-and-error approach to prescribing.

As a partner in the Horizon 2020-funded PSY-PGx project, GAMIAN-Europe has helped ensure that people with lived experience have a voice from the very beginning of the research process.

In addition, the organisation contributed to the study design, participant materials and dissemination activities. GAMIAN-Europe also helped establish the project’s Patient Advisory Board. The Board provides continuous feedback throughout the study and strengthens collaboration between researchers and people with lived experience across Europe.

Key recommendations for better patient involvement

The PSY-PGx publication identifies several practical ways to strengthen patient involvement in mental health research. For example, the authors recommend:

• reducing the burden of study participation through more accessible procedures;
• using patient-reported outcome measures that reflect personal recovery;
• communicating research findings in clear and accessible language;
• evaluating participants’ experiences throughout the study; and
• involving people with lived experience in interpreting and disseminating research results.

The authors developed these recommendations after discussions during a dedicated patient session at the 36th European College of Neuropsychopharmacology (ECNP) Congress in Barcelona. During the session, researchers, clinicians and people with lived experience shared their perspectives on how collaboration can improve mental health research.

Why it matters

The authors conclude that involving people with lived experience from the earliest stages of research leads to more patient-centred studies and stronger engagement throughout the research process. Moreover, meaningful collaboration can improve participant recruitment, strengthen trust and produce research outcomes that better reflect the needs of people living with mental health conditions.

GAMIAN-Europe proudly contributes to research that places people with lived experience at its centre and supports more inclusive mental health research across Europe.

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