The MuSE Consortium: a strategy to equitably engage diverse stakeholders to create guidance for multi-stakeholder engagement in guideline development

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (3)

Date: 

Thursday 24 October 2019 - 11:00 to 12:30

Location: 

All authors in correct order:

Riddle A1, Petkovic J1, Khabsa J2, Lytvyn L3, Magwood O1, Simeon R1, Pollock A4, Akl E2, Concannon T5, Campbell P4, Chang S6, Crowe S7, Dans L8, El-Jardali F2, Ghersi D9, Graham I10, Grant S5, Greer-Smith R11, Guise J12, Jull J13, Katikireddi V14, Langlois E15, Lyddiatt A16, Maxwell L1, Morley R17, Mustafa R18, Nonino F19, Pardo Pardo J10, Pottie K1, Riva J3, Schunneman H3, Smith M20, Stein A21, Tufte J22, Welch V23, White H24, Tugwell P1
1 Bruyère Research Institute, Canada
2 American University of Beirut, Lebanon
3 McMaster University, Canada
4 Glasgow Caledonian University, UK
5 RAND Corporation, USA
6 Agency for Healthcare Research and Quality, USA
7 Crowe Associates, UK
8 University of the Philippines-Manila, Philippines
9 National Health and Medical Research Council, Australia
10 Ottawa Hospital Research Institute, Canada
11 Healthcare Research Associates, LLC, USA
12 Oregon Health & Science University, USA
13 Queen's University, Canada
14 University of Glasgow, UK
15 World Health Organization, Switzerland
16 SPOR National Steering Committee, Canada
17 Cochrane Consumer Network, UK
18 The University of Kansas Medical Center, USA
19 Institute of Neurological Sciences of Bologna, Italy
20 Cochrane Canada Consumer, Canada
21 Universidade Federal de Ciências da Saúde de Porto Alegre, Brazil
22 PCORI Ambassador, USA
23 The Campbell Collaboration, Canada
24 The Campbell Collaboration, Australia
Presenting author and contact person

Presenting author:

Peter Tugwell

Contact person:

Abstract text
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.