Background In the United States, there have been increasing calls for guideline developers to engage consumers throughout the guideline development process. The Guidelines International Network (G-I-N) and the Institute of Medicine (IOM) have both released guideline development best practices encouraging consumer involvement; ranging from consumer input during the formulation of clinical questions, to serving as a guideline panel member and participating in the review process.
Context Our organisation has been developing evidence based clinical practice guidelines for nearly a decade and has incorporated consumers in the development process for over five years. By including consumers, our guidelines now feature more patient-centred recommendations; establishing a more balanced discussion of patient preferences and improving how we assess benefits and harms.
Description of Best Practice To more readily identify consumers for guideline development, our organisation has built a collaborative relationship with a consumer advocacy alliance. Through this relationship, we have been able to support two consumer advocates as full members on each guideline panel. To assist their participation, we provide education about our guideline development process, and outline the expectations of their involvement throughout the process.
Lessons for Guideline Developers Our experience with consumer engagement can serve as an example for other US guideline developers. Consumers can bring invaluable insight and perspective throughout guideline development and have substantially improved our guidelines. We believe consumer participation will become increasingly important in the coming years, particularly as guideline developers move towards a standardised approach to development.
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