Dear HIFA colleagues,
I was interested to see this new paper in the WHO Bulletin.
Community engagement in health guidelines and other normative products: a methodological review
https://pmc.ncbi.nlm.nih.gov/articles/PMC12666598/pdf/BLT.24.292597.pdf
Abstract, selected extracts from the full text, and a comment from me below.
ABSTRACT
Objective: To explore and map how community engagement is conducted in the development or adaptation of health guidelines, norms and standards.
Methods: We conducted a methodological review by searching MEDLINE, Scopus and CINAHL databases for articles published from January 2007 to May 2025...
Findings: We reviewed 267 publications representing 258 unique studies, predominantly based in high-income countries. We observed that people affected by the health condition were most commonly engaged, and typically through surveys, workshops or as panel members. We noted that community engagement was most commonly used to identify community priorities and values, but less frequently for defining guideline scope or implementation. Although some studies described innovative approaches (for example, including lived-experience panels), these are rarely implemented globally. Only a small proportion of our reviewed studies included any evaluation of guideline development practices.
Conclusion: Our review highlights the importance and challenges of implementing community engagement in global health guideline development, which may involve adapting existing engagement methods to a global context, leveraging technology while encouraging diversity, and carefully balancing the costs and benefits of extensive engagement. Striving for inclusive guideline development processes can lead to effective and equitable health recommendations worldwide.
SELECTED EXTRACTS
For organizations with a global mandate, such as WHO, innovative approaches, such as online communities of practice and platforms, will be needed to overcome these challenges and ensure diverse community voices are represented throughout guideline development.
Expanding beyond token representation of the community to the substantive engagement methods identified in our review, such as lived-experience panels or community advisory groups, could enhance the relevance and impact of guidelines.
Although we identified a tool to evaluate community engagement,172 an internationally accepted approach to evaluating community engagement in guidelines is currently lacking.
Ultimately, striving for inclusive and participatory guideline development processes can lead to effective and equitable health recommendations worldwide.
COMMENTS (NPW):
HIFA stands ready to support WHO leverage online communities of practice and platforms to address these challenges. Indeed, a first step might be to hold a sponsored discussion on this topic on the HIFA forums. Such a discussion would use our tried-and-tested project approach which you can read about here: www.hifa.org/projects. We would be able to run such a project for £5k over 6 months. Apart from providing a focus for our members, a new sponsored project would be wonderful financially for HIFA at this time as we depend on such projects for our sustainability. If any HIFA member or organisation would like to engage with and/or co-sponsor such a project, please let me know: neil@hifa.org
This paper is also relevant to the current work by HIFA, which we are now completing as part of a consortium with Ghana, Kenya and Norway: SUPPORT-SYSTEMS - How can decision-making processes for health systems strengthening and universal health coverage be made more inclusive, responsive and accountable? https://www.hifa.org/projects/support-systems-how-can-decision-making-pr... It is notable that barely mentions civil society organisations - it appears to focus on individual representation.
HIFA profile: Neil Pakenham-Walsh is coordinator of HIFA (Healthcare Information For All), a global health community that brings all stakeholders together around the shared goal of universal access to reliable healthcare information. HIFA has 20,000 members in 180 countries, interacting in four languages and representing all parts of the global evidence ecosystem. HIFA is administered by Global Healthcare Information Network, a UK-based nonprofit in official relations with the World Health Organization. Email: neil@hifa.org