Background: stakeholder engagement has become widely accepted as a necessary component of guideline development. The Multi-Stakeholder Engagement (MuSE) Consortium, established in 2015, is an international project team of over 90 stakeholders from diverse contexts and backgrounds. We are conducting a four-year study to create guidance to equitably and meaningfully engage stakeholders in guideline development, and for its design, implementation, and evaluation, we established a strategy to engage the Consortium.
Objectives: to describe the establishment, preliminary results, and challenges experienced in the first year of implementing the engagement strategy.
Methods: the engagement strategy was based on published guidance for involving stakeholders in health research and developed in consultation with MuSE Consortium members.
Results: all members of the MuSE Consortium are invited to provide feedback and collaborate on all phases of the MuSE study through different modes, including email, virtual and in-person meetings, online surveys, web applications, and social media. Stakeholders define their preferred roles and levels of engagement in different aspects of the study. To promote equity and diversity in stakeholder engagement, we actively solicit participation from under-represented stakeholder groups. We have established a Patient/Public Advisory Council to foster equitable processes and inclusiveness.
To date, Consortium members refined our study methods on the overall study protocol, including definitions of ‘engagement’ and ‘stakeholder,’ and the use of appropriate language about under-represented populations experiencing social and health inequities.
Challenges to engaging the MuSE Consortium include administrative burden (time/resources) dedicated to co-ordinating a large and geographically dispersed group, diversifying Consortium membership outside of known networks, increasing representation from low- and middle-income countries, and ensuring all input is considered and integrated accordingly.
Looking ahead, we plan to harness social media to increase involvement from under-represented groups and schedule annual meetings of study stakeholders to guide study progress.
Conclusions: the engagement strategy enhanced the MuSE study protocol through refining our definitions and methods, to reflect diversity and inclusivity. Continuous MuSE Consortium engagement will help us create guidance for multi-stakeholder engagement in guideline development that is relevant, feasible, and acceptable to users.
Patient or healthcare consumer involvement: the MuSE Study Stakeholder Engagement Strategy actively seeks the input of patients and consumers, to provide input on both the methods as well as the process used in the study.