Patient and public engagement in research and health system decision making: A systematic review of evaluation tools

• Published in: Health expectations : an international journal of public participation in health care and health policy Vol. 21; no. 6; pp. 1075 - 1084
• Main Authors: Boivin, Antoine, L'Espérance, Audrey, Gauvin, François‐Pierre, Dumez, Vincent, Macaulay, Ann C., Lehoux, Pascale, Abelson, Julia
• Format: Journal Article
• Language: English
• Published: England John Wiley & Sons, Inc 01.12.2018; John Wiley and Sons Inc
• Subjects: Appraisal; Citizen participation; Clinical decision making; Collaboration; Decision Making; Delivery of Health Care; Digital media; Empowerment; Evaluation; evaluation instruments; Evidence-based medicine; Health; Health care; Health Priorities; Health Services Research; Humans; International organizations; Literature reviews; Medical research; Medicine, Experimental; Original Research Paper; Original Research Papers; patient and public engagement; Patient Participation; Patients; Program Evaluation; Public participation; Quality control; Quality Improvement; Reliability; Rigour; Social media; Surveys and Questionnaires; Systematic review; Websites; Canada; Manitoba Canada; Quebec Canada; British Columbia Canada; Saskatchewan Canada; Northwest Territories Canada; Newfoundland & Labrador Canada; evaluation instruments; patient and public engagement; systematic review; quality improvement; research
• ISSN: 1369-6513; 1369-7625; 1369-7625
• DOI: 10.1111/hex.12804

Background Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published. Objective Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making. Methods We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject‐matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability. Results In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public. Conclusion A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.