Principles and Strategies for Interest‐Holder Engagement in Health Guideline Development

Rationale Guidelines are statements or recommendations that help interest‐holders make decisions about clinical care or health policy. Engaging a wide range of interest‐holders, such as patients, providers, policymakers and members of the public in the guideline development process can help ensure that guidelines are fit‐for‐purpose. The MuSE Consortium is developing guidance for the engagement of interest‐holders throughout the guideline development process in the form of an extension of the Guidelines International Network (GIN)‐McMaster Guideline Development Checklist (GDC). Aims and Objectives The objective of this study is to identify principles and strategies to promote interest‐holder engagement across the guideline development enterprise. Methods We conducted interviews with 43 individuals from 10 different interest‐holder groups and 15 different countries. We used a framework analysis to thematically analyze findings and identify principles and strategies relevant for engaged guideline development. Results Guideline development initiatives may better engage interest‐holders by shifting from vertical to horizontal power structures, emphasizing collaboration and shared decision‐making. We identified a need for epistemic justice, promoting fairness and equality in knowledge production and validation, particularly for patients and members of the public. Representation is a crucial key issue, necessitating diverse perspectives in guideline development groups. Strategies include involving interest‐holders early and meaningfully in the guideline development process through governance, setting clear expectations and timelines, and providing fair compensation. Dissemination activities should extend beyond academic publications, empowering all interest‐holders to contribute to activities such as presentations, educational sessions, or social media campaigns. While engagement is desirable, limitations may arise in emergency contexts or resource‐constrained settings. Conclusions Guideline developers may need to make pragmatic decisions as to who they engage in guideline development and how. Capacity strengthening in low‐ and middle‐income countries may help address current disparities in engagement in guideline development. Future research should explore issues around representativeness of interest‐holders.