A scoping review of patient and public involvement in empirical stroke research

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.

This scoping review, adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Scoping Review guidelines, aims to identify and summarize how PPI is currently implemented and reported in empirical stroke research using a participatory approach.

A comprehensive search strategy was developed and implemented across Medline, CINAHL, EMBASE, PsynchINFO, and Cochrane electronic databases, supplemented by gray literature searches. Empirical stroke research articles in the English language, published from 2014 up to 2023, and documenting PPI activity were included. Of the 18,143 original articles identified, 2824 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 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 to dissemination. When studies were examined for compliance with the Guidance for Reporting Involvement of Patients and the Public (GRIPP) 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.

PPI is underutilized and inconsistently reported in current empirical stroke research. PPI must become more widely adopted, notably in low- and middle-income countries. Consensus-driven standards for inclusion of PPI by funding organizations and publishers are required to support its widespread adoption.