Patient and public involvement in healthcare: a systematic mapping review of systematic reviews – identification of current research and possible directions for future research

Abstract

Objectives To provide an overview of patient and public involvement (PPI) in the mesolevel and macrolevel of healthcare (different from PPI in research) and identify directions for future research by mapping contexts, terminology, conceptual frameworks, measured outcomes and research gaps.Design Mapping review of systematic reviews. A patient coresearcher (JB) was involved in all stages. A broad search strategy was applied to capture the variation in terminology.Data sources MEDLINE, CINAHL and PsycINFO were searched from 1 January 2001 to 5 December 2022.Eligibility criteria We included systematic reviews of empirical studies focusing on PPI in the mesolevel and macrolevel of healthcare.Data extraction and synthesis Three independent reviewers used standardised methods to screen studies and extract data. Thematic categories were created inductively through iteration. The results were organised in narrative, visual or tabular formats.Results 4419 identified records were screened. 37 systematic reviews were eligible for inclusion. Most studies were narrative syntheses (N=26). Identified context categories were PPI for healthcare quality improvement (22%), patient safety (8%), community-based initiatives (27%), peer support (16 %) and education of healthcare professionals (27%). A wide range of terms was used to discuss PPI, with community participation being the most common. 28 reviews reported on frameworks, conceptual guidance and/or policy documents. Nine different types of outcomes were identified. The research gap pointed out most frequently is the lack of studies of robust designs that allow for replication and long-term follow-up, followed by studies on cost-effectiveness and resources needed. There is a need for consensus on the use of terminology.Conclusions This mapping review sheds light on the evolving landscape of PPI in healthcare. To advance the field, future research should prioritise rigorous study designs, cost-effectiveness assessments and consensus-building efforts to create a more unified and impactful approach for PPI in healthcare.