Lessons learned from including Patient and Public Involvement members throughout research projects in Tic Disorder research

BACKGROUND: Shared and reflective practice when conducting Patient and Public Involvement and Engagement (PPIE) with underserved communities requires a collaborative approach to understand how best to involve public contributors across the lifecycle of a research project. Researchers from the MindTech research group at the University of Nottingham, UK, conducted three studies aiming to improve healthcare services for people living with tics, and address gaps in current treatment provision: (1) 'Tourette's Hear Us' - a qualitative exploration of experiences accessing healthcare for tics; (2) INTEND (ImproviNg Tic services in EnglaND) - a study to develop a care pathway for children and young people with tics and (3) ORBIT-UK (Online Remote Behavioural Intervention for Tics UK) - a study to transform an online behavioural intervention for tics into a digital treatment implemented in services. Each study included a PPIE panel. We present these three case studies of how PPIE was conducted and key learnings across them. METHODS: PPIE panels were actively involved in project design, recruitment, data collection, interpretation, and dissemination. Research teams documented the PPIE activities and their impact on the research. Collaboration between researchers facilitated discussions of the progress and impact of PPIE in each study and enabled shared learning to collectively improve future PPIE methods. LEARNINGS: Our key learnings, developed through challenge, discussion, and resolution, are presented across the three case studies and include: the importance of representative PPIE panels comprised of members with genuine lived experiences; the provision of safe and inclusive spaces to support members to share their perspectives; supporting communication to facilitate contributions and engagement; tracking and reflecting on the impact of PPIE activities on the project; and sustaining involvement throughout the research cycle, including co-authoring outputs. Evaluating PPIE methods through panel feedback was also highlighted. CONCLUSIONS: This paper provides new insights into how people with tics can be meaningfully engaged as research partners, and additional adjustments that should be made to accommodate the unique and involuntary nature of tics. These learnings extend beyond tic disorders, offering transferable methodologies to strengthen PPIE.