Patient participation in the development of clinical practice guidelines (CPGs) is critical for validity and trust. Many guideline panels now include patient representatives. Engagement of these individuals may be improved by training them about the process and their role before they join a guideline panel. To aid patient representatives in engagement in the improvement of guidelines, we developed and implemented a curriculum. The curriculum was developed based on content from the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Working Group and readability principles, and was delivered through a webinar followed by a face-to-face half a day workshop. Twenty-four patient representatives were recruited by the American Society of Hematology to serve on guideline panels. Barriers assessment was facilitated by a pre-curriculum survey. The curriculum targeted patient representatives’ knowledge, skills and attitudes and was followed by actual engagement in a guideline panel and a post-curriculum survey. Participants reported that the combination of the two training methods was very useful (9/10 on the Likert scale) in increasing their knowledge about guideline development. They agreed that their skills and self-efficacy in developing guidelines improved (8/10). Their attitudes (confidence in their ability to participate) improved by 30% between the webinar and the workshop. They developed a script to use during panel deliberations and an instruction sheet for the guideline panel about how to empower and engage them as active participants in the guideline development process. The benefits of incorporating patients’ voice in CPGs are multifold. These benefits may be optimised by providing patient representatives with training that addresses barriers to engagement and tools to increase their knowledge, skills and attitudes required for meaningful participation.
- general medicine
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Contributors All the authors have contributed significantly to this manuscript. MHM, LD and EL: conceived the idea, developed the protocol for this curriculum and implemented it. LD and EL delivered online and in-person workshops. MHM, LD and EL significantly contributed to the manuscript. SW and RK: provided expertise in patient engagement and editing the manuscript.
Competing interests None declared.
Ethics approval All procedures performed in studies involving patient representatives were in accordance with the ethical standards of the institutional ethical committee. Ethical approval was granted by the Mayo Clinic Institutional Review Board, Rochester, Minnesota.
Provenance and peer review Not commissioned; externally peer reviewed.
Patient consent for publication Not required.
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