Exploring expectations and assumptions in the public and patient engagement literature: A meta-narrative review.

Abstract

Public and patient engagement (PPE) is increasingly recognized in policy statements as essential to achieving transformation towards patient-centred, value-based, integrated care. Despite extensive research over two decades, important gaps and questions remain around how the efforts invested in engagement drive the changes needed to meet these objectives. We conducted a meta-narrative review of systematic and scoping reviews to understand persistent difficulties and uncertainties in this research domain. Thirty-eight reviews looking at studies of PPE in care, healthcare organizations and systems were appraised. We synthesized the expectations of PPE that prompted each review, the guiding ideas about how PPE comes about, main findings and the questions and gaps they raise. Four storylines are found in reviews: 1. Terminology is inconsistent and concepts are weak; 2. Outcomes of care can be improved 3. Influence on healthcare delivery and design is uncertain; 4. Characteristics of engagement efforts are consequential. Three assumptions underlie these storylines and appear as barriers to practice and research; alternative approaches based on collaborative governance and theories of change are proposed to understand and support engagement with transformative potential.