BACKGROUND: Impactful, evidence-based solutions in surveillance, prevention, acute care, and rehabilitation for stroke survivors are required to address the high global burden of stroke. Patient and Public Involvement (PPI), where patients, their families, and the public are actively involved as research partners, enhances the relevance, credibility, and impact of stroke-related research. AIMS: This scoping review, adhering to the PRISMA Scoping Review guidelines, aims to identify and summarize how PPI is currently implemented and reported in empirical stroke research using a participatory approach. SUMMARY OF REVIEW: A comprehensive search strategy was developed and implemented across Medline, CINAHL, EMBASE, PsynchINFO and Cochrane electronic databases, supplemented by grey literature searches. Empirical stroke research papers in the English language, published from 2014 up to 2023 and documenting PPI activity were included. Of the 18,143 original papers identified, 2,824 full text manuscripts matching from this time window were screened. Only 2% (n=72) of these directly reported embedded PPI activity in empirical research. The majority were qualitative in design (60%) and were conducted in high-income countries (96%). Only one included study originated from a developing country, where the burden of stroke is highest. Most studies (94%) provided some information about the activities carried out with their PPI partners, mainly centered on the study design (57%) and management (64%), with only 4% of studies integrating PPI across all research cycle phases from funding application through to dissemination. When studies were examined for compliance with the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) short form checklist, only 11% of included studies were 100% compliant. Twenty-one studies (29%) reported barriers and facilitators to including PPI in stroke research. Organization, authentic partnership and experienced PPI representatives were common facilitators and identified barriers reflected concerns around adequate funding, time required and diversity in perspectives. A positive reporting bias for PPI impact was observed, summarized as keeping the patient perspective central to the research process, improved care of study participants, validation of study findings, and improved communication / lay-summaries of complex research concepts. CONCLUSIONS: PPI is underutilised and inconsistently reported in current empirical stroke research. PPI must become more widely adopted, and notably in low- and middle-income countries. Consensus-driven standards for inclusion of PPI by funding organisations and publishers is required to support its widespread adoption.
Background: Embedding Public and Patient Involvement (PPI) in postgraduate research has been recognized as an important component of post-graduate training, providing research scholars with an awareness and a skillset in an area which prepares them for future roles as healthcare researchers. Improving Pathways for Acute STroke And Rehabilitation (iPASTAR) is a structured PhD training program [Collaborative Doctoral Award (CDA)] which aims to design a person-centered stroke pathway throughout the trajectory of stroke care, to optimize post-stroke health and wellbeing. PPI is embedded at all stages. Purpose: The iPASTAR research programme was strongly informed by a round-table PPI consultation process with individuals who experienced stroke and who provided broad representation across ages, gender, geographical locations (urban and rural) and the PhD themed areas of acute care, early supported discharge and lifestyle-based interventions after stroke. Four PhD scholars taking part in the CDA-iPASTAR now work collaboratively with four stroke champions, supported by a wider PPI advisory panel. Methods: This study will evaluate the process and impact of embedding PPI during a PhD program. We will conduct a longitudinal mixed-methods evaluation, conducting focus groups at 24, 36, and 48 months to explore the experiences of the key stakeholders involved. The participants will include PhD scholars, PPI partners (PPI Advisory Group and PPI Champions), PhD supervisors and a PPI manager. An independent researcher will conduct the evaluation. We will include focus groups, individual interviews and participant reflections. Qualitative data will be analyzed using thematic and content analysis, quantitative data will be analyzed using descriptive statistics. Discussion: PPI and patient voice initiatives bring together researchers, family, and people with health care issues into meaningful dialogue and allow the development of a patient-voice learning network. Embedding PPI training within a PhD program can build meaningful capacity in PPI partnerships in stroke research.
Background: Growing consensus supports public and patient involvement (PPI) in research as the lived experience of patients, family carers and users of health and social care services bring unique insights to healthcare research. The impact and burden of stroke present ongoing challenges for those living with its consequences and could potentially limit PPI activity. This review aims to explore PPI in published stroke research to identify and describe the extent, nature and design of PPI activities, the type/s of studies involved and the profile of PPI participants engaged in stroke research. Methods: This systematic scoping review, guided by the Arksey & O'Malley five step framework, will be reported according to the PRISMA-ScR reporting guidelines. PPI is embedded at each stage of this proposed scoping review from conceptualisation, participation, contribution and collaboration. The Population, Concept, Context (PCC) structure defines the research question which asks - How is PPI in stroke research currently being conducted and how do the study authors report their PPI activities and its impact? A comprehensive range of electronic databases including PubMed, CINAHL, EMBASE, PsychINFO and the Cochrane Database of Systematic Reviews will generate a broad range of studies. Grey literature (e.g. OpenGrey, Leanus) and internationally recognised stroke organisation websites will be searched for additional research reports. Data extraction will adhere to the Joanna Briggs Institute guidelines, with results collated and mapped to the research cycle stage/s. Conclusions: The outlined scoping review protocol will comprehensively identify and map the existing scientific literature that reports PPI in stroke research. Findings will be presented in relation to PPI conceptualisation, participant profiles and activities in stroke research, volume, type and range of approaches. Knowledge gaps and future priorities for PPI in stroke research will be identified.
