Beyond the Meeting: Patient and Public Involvement Practices and Barriers to Inclusive Participation in Stroke Research.

backgroundPatient and Public Involvement (PPI) aims to embed patient perspectives in all aspects of health research. In stroke, where diverse impairments affect communication, cognition, and mobility, inclusive PPI is particularly critical yet challenging. Little is known about how stroke PPI is currently practised or what barriers researchers face in supporting the participation of stroke survivors with complex needs.

objectivesTo understand how stroke PPI is currently structured and practised, what resources it requires, how research teams support stroke survivors with diverse impairments and what barriers exist to more inclusive practice.

methodsWe conducted a national questionnaire with Principal Investigators of NIHR, UKRI and Stroke Association-funded stroke research projects active between October 2019 and January 2025 (31 responses representing 104/185 eligible projects). Open-ended questions elicited detailed accounts of PPI practices, resource requirements, adaptations to support diverse participation and barriers to inclusion. Data were analysed using qualitative description and thematic analysis, drawing on concepts of infrastructure to examine how the way PPI is organised shapes participation.

resultsFour interconnected themes were identified. Despite considerable variation in scale and sophistication, the group meeting dominated PPI practice, functioning as taken-for-granted infrastructure through which involvement happens. Resource constraints, particularly unfunded coordination time and absent specialist communication support, limited what was viable. Researchers consistently reported lacking expertise to support stroke survivors with severe impairments, relying heavily on carers whose involvement sometimes functioned as proxy representation. While participants demonstrated creativity and commitment, PPI groups remained predominantly 'white, middle class, and [with] minor stroke severity', with innovation not leading to more inclusive participation. DISCUSSION: Group meetings dominate stroke PPI, but they systematically exclude stroke survivors whose impairments make participating in meetings difficult. Achieving inclusive stroke PPI requires not merely adapting meetings but reimagining participation infrastructure, adequately resourcing diversity work and addressing expertise gaps through multidisciplinary support. LIVED EXPERIENCE OR PUBLIC CONTRIBUTION: This research was informed by prior workshops with stroke survivors and carers from two PPI groups, who identified barriers to PPI participation and emphasised the need for methods to support more severely affected stroke survivors. Stroke survivors shaped questionnaire content and helped refine the findings and themes.