Guideline organizations’ guidance documents paper 4: interest-holder engagement

BACKGROUND AND OBJECTIVES: Interest-holder engagement is increasingly recognized as essential to the relevance and uptake of practice guidelines. "Interest-holders" are groups with legitimate interests in the health issue under consideration. The interests' legitimacy arises from the fact that these groups are responsible for or affected by health-related decisions. The objective of this study was to describe interest-holder engagement approaches for practice guideline development as described in guidance documents by guideline-producing organizations. METHODS: We compiled a list of guideline-producing organizations and searched for their guidance documents on guideline development. We abstracted data on interest-holder engagement details for each subtopic in the Guidelines International Network (GIN)-McMaster Guideline Development Checklist (a total of 23 subtopics following the division of some original checklist topics). RESULTS: Of the 133 identified organizations, 129 (97%) describe in their guidance documents engaging at least 1 interest-holder group in at least 1 GIN-McMaster checklist subtopic. The subtopics with most engagement are "developing recommendations and determining their strength" (96%) and "peer review" (81%), while the subtopics with the least engagement are "establishing guideline group processes" (3%) and "training" (2%). The interest-holder groups with the highest engagement in at least one of the subtopics are providers (95%), principal investigators (78%) and patient representatives (64%), while interest-holder groups with lower engagement are program managers (3%), and peer-reviewed journal editors (1%). Across most subtopics, engagement occurs mostly through panel membership and decision-making level. CONCLUSION: A high proportion of organizations engaged at least 1 interest-holder group in at least 1 subtopic of guideline development, with panel membership being the most common approach. However, this engagement was limited to a few interest-holder groups, and to a few subtopics with highest engagement.