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

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).

The objective of this study is to identify principles and strategies to promote interest-holder engagement across the guideline development enterprise.

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.

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.

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.