Patient and Public Involvement in Developing and Testing Mental Health-care Interventions: Strategies and Reflections from Three Research Programs

Abstract

Patient and public involvement (PPI) is valued and widely practiced in mental health research but in different ways. We present three research programs, aiming to develop and test mental healthcare interventions and we discuss their PPI strategies and activities. In all these programs, PPI has been sought from their initial conception and design and has helped their management, intervention development processes, quantitative and qualitative evaluations, and in the assessment of PPI activities themselves. The programs focus on different groups (patients with chronic depression, patients with psychotic disorders, and carers) and develop different interventions. Comparing these programs offers the opportunity to appreciate different models of involvement. These, for example, range from training lived experience collaborators to analyze qualitative data directly to asking them to comment on findings; from involving lived experience collaborators in the design of new interventions to involving them in intervention adaptation to a particular group or circumstance; and from carrying out formal PPI evaluations to collecting informal feedback during meetings. Even in the diversity of programs and PPI activities presented, common themes could be identified in relation to: specifying (and ideally co-designing) expectations and role of contributors; making bureaucratic procedures as user-friendly as possible; appropriately choosing or blending online and offline meetings; and designing flexible and inclusive arrangements to maximize participation. Our experiences contribute to a growing evidence base that can help researchers to develop meaningful, enjoyable, and constructive collaborations with people with lived experience. These collaborations will keep clinical mental health research relevant, impactful, and tailored to patients' needs.