What is this review about?
There are gaps in literature about when and how to engage with different interest-holders throughout the guideline development process. Interest-holder engagement helps to make sure that the guideline will meet the needs of the people and groups who are affected by the guideline. Interest-holders include patients, the public, providers of health services, health programme managers, and many more. This review identifies, describes and summarizes guidance and methods for engagement. We mapped this guidance to the GIN-McMaster Guideline Development Checklist to summarize the available guidance for each of our interest-holder groups.
What are the main findings of this review?
What studies are included?
This review includes 16 papers that provide guidance for at least one interest-holder group and at least one topic of guideline development. It includes papers published from 1996 to 2022 and in Australia, Denmark, the Netherlands, the UK, and the USA, and eight international papers.
How much guidance is available for the different interest-holder groups under review?
A majority of the guidance focuses on patient involvement, with limited guidance for healthcare providers, policymakers, product makers, programmes managers, and payers of health services. We did not identify guidance for funders of health research or editors of peer-reviewed journals.
What is the available guidance for multi-interest-holder engagement throughout the steps of health guideline development?
The earlier topics in the guideline development process, such as organization, planning, training, and budget, priority setting, guideline group membership and processes, and topic selection have the most guidance. Conflict of interest considerations, question generation, and considering importance of interventions and outcomes, judging quality or certainty of a body of evidence, developing recommendations, and updating have less guidance. There is no specific guidance on the optimal number of guideline panel members, probably because this is dependent on the context and setting of the guideline, and available time and resources.
What do the findings of this review mean?
This review identifies gaps in guidance for engaging with interest-holders throughout the guideline and recommendation development process. We found limited guidance for all interest-holder groups except for patients and most guidance referred to the early stages of guideline development.
We will use the findings of this review to develop an extension of the GIN-McMaster Guideline Development Checklist focused on interest-holder engagement.