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- Title
Patient and public engagement in research and health system decision making: A systematic review of evaluation tools.
- Authors
Boivin, Antoine; L'Espérance, Audrey; Gauvin, François‐Pierre; Dumez, Vincent; Macaulay, Ann C.; Lehoux, Pascale; Abelson, Julia
- Abstract
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.
- Subjects
CINAHL database; INFORMATION storage &; retrieval systems; MEDICAL databases; MEDICAL information storage &; retrieval systems; PSYCHOLOGY information storage &; retrieval systems; MEDICAL care; MEDLINE; QUESTIONNAIRES; RESEARCH; PATIENT participation; SYSTEMATIC reviews; SOCIAL media
- Publication
Health Expectations, 2018, Vol 21, Issue 6, p1075
- ISSN
1369-6513
- Publication type
Article
- DOI
10.1111/hex.12804