Development and evaluation of a stroke research Public Patient Involvement Panel

Abstract

Background Public and patient involvement (PPI) is important in stroke research to ensure that research conducted reflects the priorities and needs of people after stroke. Several factors have been found to affect PPI, including location of the research and time requirements for participation. The incidence of stroke is rising, and can result in symptoms including fatigue, depression, and physical/cognitive impairments. Aims 1) Describe the development of a PPI advisory group and a healthcare professional advisory group for stroke rehabilitation research and 2) to explore the perspectives of the members of the PPI groups on being involved in the research process. Methods A stakeholder panel consisting of up to 20 people with stroke, members of the public and healthcare professionals will be formed. A pragmatic purposive sampling technique using snowball sampling will be used to recruit members. The PPI panel will meet four times and will be supported by the guidelines developed from the INVOLVE framework. The PPI panel will be involved as co-researchers in the conceptualisation of future stroke rehabilitation research, the delivery of such studies, the analysis and dissemination of findings. Following the development of the panel, we will conduct semi-structured focus groups to collect qualitative data, examining the perspectives of members. Separate focus groups will be held for people with stroke, family members/cares, and healthcare professionals/researchers. Data will be transcribed and analysed using Braun and Clarke’s Reflexive Thematic Analysis. This will result in a set of themes and subthemes describing participants' opinions and experience of being on a PPI panel in stroke rehabilitation research. Conclusions PPI is an essential part of research in stroke. Stakeholders can provide key insights into the research processes. The results of this qualitative study will provide insight into the barriers and enablers of their participation in PPI in stroke rehabilitation research.