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Barriers and facilitators for patient involvement and engagement in health research and development- An interview study with key actors [PCC191]

Tuesday May 5, 2026 12:00 - 11:15 Poster Arena

Presenter: Kiana Kiani

Track: Poster

 Previous research indicates that patient involvement and engagement can improve care quality, self-management, and patient– care provider relationships. At the same time, structural barriers, power asymmetries, and the complexity of involving multiple actors across diverse contexts continue to challenge the meaningful implementation of Patient and Public Involvement (PPI). The present study aimed to explore key actors’ perspectives on the barriers and facilitators to patient involvement and engagement, with particular attention to the factors influencing involvement and engagement at the meso- and macro-levels. Semi-structured interviews were conducted with 29 participants representing patients, healthcare, research, industry, and public authorities. All had prior experience with PPI, and data were analysed using qualitative content analysis by Graneheim & Lundman. The analysis of the interviews resulted in the identification of barriers and facilitators linked to the following themes: Acknowledgement of Power and Responsibility, Structure and Regulation, Patient Representative – a Role with Internal Contradictions, Expectations, and Authenticity versus Tokenism. Interview findings suggested that barriers and facilitators were primarily relational in nature, closely linked to power dynamics between key actors. These dynamics were also shaped by the varying conditions that different actors face, depending on their contexts and the institutional frameworks guiding their PPI-related activities. For more effective PPI activities it is essential that relational dynamics and power relations are made explicit and addressed with transparency. Clearly articulating expectations regarding roles and responsibilities can further facilitate this process and, in turn, support the development of more robust structures to advance involvement and engagement while reducing the risk of tokenism. Adopting a person-centred approach to PPI might be one way to ensure that PPI activities are not only systematically implemented but also experienced as meaningful.
Language

English

Conference

GCPCC

GCPCC Code

PCC191

Lecturers

Kiana Kiani Presenter

Kiana Kiani, Vinh Phillips Ingvason Nguyễn, Elin Sirra, Catarina Wallengren, Axel Wolf, Ida Björkman