Tensions in patient involvement and engagement in health research and development: a qualitative interview study with...

Patient involvement and engagement (PIE) is increasingly recognised as essential for improving health research and service design and for supporting the transition toward person-centred healthcare systems. However, the implementation of PIE remains inconsistent across health research and development globally. The aim of this study was to examine how barriers and facilitators to PIE in health research and development are understood and negotiated by different key actors. This study adopted a qualitative design. Semi-structured interviews were conducted with a diverse group of key actors, including patient representatives, healthcare professionals, health researchers, representatives from pharmaceutical and medical industry, and public authorities (n = 29). Participants were recruited through the European Patients' Academy on Therapeutic Innovation (EUPATI) Sweden and had prior experience of PIE in their respective roles. The data were analysed using qualitative content analysis, as described by Graneheim and Lundman. The findings revealed barriers and facilitators related to the following themes: Shifting culture, power and responsibility; Guidance through clear structures; Expectations of the patient representative role; Trust and communication; and Towards shared understanding. The different actors' understandings of these barriers and facilitators create tensions that need to be acknowledged and negotiated in order to drive PIE forward. We suggest that incorporating the ethical foundation for person-centred approach with narrative, partnership and shared responsibility trough documentation in PIE activities would offer a way forward, as many of the barriers and facilitators identified were related to how PIE was carried out in practice. Further studies are needed to examine how incorporation of Person-centred approach in PIE would be implemented and evaluated with the aim of strengthening collaboration and enabling more meaningful involvement.