# Engaging adults with severe mental illness in research: considerations and practical recommendations for meaningful patient and public involvement

## TL;DR

This paper outlines how to meaningfully involve adults with severe mental illness in mental health research, offering practical strategies and insights from a five-year study.

## Contribution

The paper provides novel, practical recommendations for engaging adults with severe mental illness in all stages of mental health research.

## Key findings

- Meaningful involvement of people with SMI was feasible and added significant value to the research process.
- Strong relationships, clear communication, and tailored support were key to successful engagement.
- Flexibility and accessibility were essential to accommodate varying mental health needs and participation levels.

## Abstract

Patient and public involvement (PPI) in mental health research is essential but presents unique challenges, particularly when engaging adults with severe mental illness (SMI). This report focusses on the process, benefits, and challenges of involving adults with lived experience of SMI as active partners within a five-year research programme aimed at co-producing a new evidence- and theory-based intervention to support smoking behaviour change following mental health inpatient care. It summarises our PPI strategy, the lived experience insight provided, and practical recommendations for facilitating meaningful involvement of people with SMI throughout the research process.

We reflect on our approach to PPI within the research programme. Involvement spanned the entire research programme, from intervention design to dissemination. The research team reflected on the PPI participants’ experience via informal feedback, meeting notes, and reflective team discussions. These reflections informed the identification of practical considerations and recommendations.

PPI was crucial to the research and had a powerful, meaningful impact, with group members playing a key role in shaping participant-facing materials and intervention resources. Success was supported by early planning, dedicated facilitation, sustained relationship-building, and clear communication. Challenges included balancing meaningful input with accessibility, accommodating individual needs and preferences, and supporting varying levels of engagement due to participants’ ongoing mental health experience.

Involving adults with SMI in research is both feasible and valuable, and requires careful planning, flexibility, and support. This report highlights the importance of relational approaches and tailored support to enable meaningful contributions, offering practical guidance for researchers developing inclusive PPI strategies in mental health trials involving complex populations.

People with severe mental illness (SMI) often face particular challenges, especially when it comes to being involved in research. However, their input is very important, especially for research that aims to support their health and wellbeing. This report describes how we involved people with lived experience of SMI in a five-year research programme. The goal of the research was to support people to stop smoking after leaving a mental health hospital.

We involved people with lived experience of SMI (including one carer), at every stage of the research, from designing the intervention to sharing the results. The research team looked back on their experience, reviewed meeting notes, and had group discussions to reflect on what went well and what could be improved. These reflections helped the team to come up with recommendations for involving people with lived experience in future research.

It was important to build strong relationships, communicate clearly, and provide support throughout. It was important to ensure activities were accessible and flexible, especially as people’s ability to participate could change depending on their mental health. It was also important to adapt research activities to individual preferences and needs.

Involving people with lived experience of SMI in research was both possible and valuable. Their voices helped make the research more relevant. Our experience shows that with the right support, people with lived experience can make important contributions to complex mental health studies. This short report offers recommendations to help other researchers plan meaningful and inclusive involvement in similar projects.