Article type
Abstract
Background: In the development of guidelines, emphasis is being placed on engaging "interest holders," that is, those that are responsible for or affected by health-related decisions. Indeed, incorporating interest holders’ views helps in tailoring recommendations and enhances their implementation.
Objectives: To describe interest holder engagement approaches as depicted in methodological guidance by guideline-producing organizations.
Methods: We compiled a comprehensive list of guideline-producing organizations and searched for methodological guidance documents on guideline development. We abstracted data on the general characteristics of the stakeholder engagement policy, and details of stakeholder engagement for each of the topics of the GIN-McMaster guideline development checklist (n = 23 topics after splitting some topics of the original checklist). We assessed 2 levels of engagement: advice/feedback and decision-making.
Results: Out of 133 identified organizations, 129 (97%) engaged at least one interest holder group in relation to at least one of the GIN-McMaster guideline development checklist topics. Interest holders were engaged in a median of 8 topics (IQR = 6-11). The topics with most engagement were "developing recommendations and determining their strength" (90%) and "peer review" (82%), whereas the topics with the least engagement were "conflict of interest considerations" (3%) and "establishing guideline group processes" (2%). The groups with the highest engagement in at least one of the topics were providers (93%), principal investigators (71%), and patient representatives (63%), whereas the groups with the least engagement were product makers (10%) and purchasers (2%). Across topics, engagement mostly occurred through panel membership. Level of engagement varied per topic, being mostly advice/feedback for some steps (eg, "guideline group membership" and "peer review") and decision-making for others (eg, "reporting"). Few organizations excluded specific interest holder groups (17%) (eg, product makers).
Conclusions: A high proportion of organizations engaged at least one interest holder group in at least one step of guideline development. However, this engagement was limited to providers, principal investigators, and patient representatives and to a few topics with the highest engagement.
Relevance to Patients and Engagement: Interest holder engagement facilitates the incorporation of views of patients and the public in guideline development, increasing relevance, uptake, and impact. We did not include patient/public representatives in this study.
Objectives: To describe interest holder engagement approaches as depicted in methodological guidance by guideline-producing organizations.
Methods: We compiled a comprehensive list of guideline-producing organizations and searched for methodological guidance documents on guideline development. We abstracted data on the general characteristics of the stakeholder engagement policy, and details of stakeholder engagement for each of the topics of the GIN-McMaster guideline development checklist (n = 23 topics after splitting some topics of the original checklist). We assessed 2 levels of engagement: advice/feedback and decision-making.
Results: Out of 133 identified organizations, 129 (97%) engaged at least one interest holder group in relation to at least one of the GIN-McMaster guideline development checklist topics. Interest holders were engaged in a median of 8 topics (IQR = 6-11). The topics with most engagement were "developing recommendations and determining their strength" (90%) and "peer review" (82%), whereas the topics with the least engagement were "conflict of interest considerations" (3%) and "establishing guideline group processes" (2%). The groups with the highest engagement in at least one of the topics were providers (93%), principal investigators (71%), and patient representatives (63%), whereas the groups with the least engagement were product makers (10%) and purchasers (2%). Across topics, engagement mostly occurred through panel membership. Level of engagement varied per topic, being mostly advice/feedback for some steps (eg, "guideline group membership" and "peer review") and decision-making for others (eg, "reporting"). Few organizations excluded specific interest holder groups (17%) (eg, product makers).
Conclusions: A high proportion of organizations engaged at least one interest holder group in at least one step of guideline development. However, this engagement was limited to providers, principal investigators, and patient representatives and to a few topics with the highest engagement.
Relevance to Patients and Engagement: Interest holder engagement facilitates the incorporation of views of patients and the public in guideline development, increasing relevance, uptake, and impact. We did not include patient/public representatives in this study.