Key issues for stakeholder engagement in the development of health and healthcare guidelines

Jennifer Petkovic; Olivia Magwood; Lyubov Lytvyn; Joanne Khabsa; Thomas W Concannon; Vivian Welch; Alex Todhunter-Brown; Marisha E Palm; Elie A Akl; Lawrence Mbuagbaw; Thurayya Arayssi; Marc T Avey; Ana Marusic; Richard Morley; Michael Saginur; Nevilene Slingers; Ligia Texeira; Asma Ben Brahem; Soumyadeep Bhaumik; Imad Bou Akl; Sally Crowe; Laura Dormer; Comfort Ekanem; Eddy Lang; Behrang Kianzad; Tanja Kuchenmüller; Lorenzo Moja; Kevin Pottie; Holger Schünemann; Peter Tugwell

doi:10.1186/s40900-023-00433-6

Key issues for stakeholder engagement in the development of health and healthcare guidelines

Res Involv Engagem. 2023 Apr 28;9(1):27. doi: 10.1186/s40900-023-00433-6.

Authors

Jennifer Petkovic^{1

2}, Olivia Magwood^{3

4}, Lyubov Lytvyn⁵, Joanne Khabsa⁶, Thomas W Concannon⁷, Vivian Welch^{3

8}, Alex Todhunter-Brown⁹, Marisha E Palm^{10

11}, Elie A Akl^{12

13}, Lawrence Mbuagbaw^{14

15

16

17

18

19}, Thurayya Arayssi²⁰, Marc T Avey²¹, Ana Marusic²², Richard Morley²³, Michael Saginur²⁴, Nevilene Slingers²⁵, Ligia Texeira²⁶, Asma Ben Brahem²⁷, Soumyadeep Bhaumik²⁸, Imad Bou Akl¹², Sally Crowe²⁹, Laura Dormer³⁰, Comfort Ekanem³¹, Eddy Lang³², Behrang Kianzad³³, Tanja Kuchenmüller³⁴, Lorenzo Moja³⁵, Kevin Pottie^{36

37}, Holger Schünemann^{38

39}, Peter Tugwell^{40

41

42

43}

Affiliations

¹ Bruyère Research Institute, Ottawa, Canada. jennifer.petkovic@uottawa.ca.
² Faculty of Medicine, University of Ottawa, Ottawa, Canada. jennifer.petkovic@uottawa.ca.
³ Bruyère Research Institute, Ottawa, Canada.
⁴ Interdisciplinary School of Health Sciences, University of Ottawa, Ottawa, Canada.
⁵ McMaster University, Hamilton, Canada.
⁶ Clinical Research Institute, American University of Beirut Medical Center, Beirut, Lebanon.
⁷ The RAND Corporation and Tufts University School of Medicine, Boston, MA, USA.
⁸ School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada.
⁹ Nursing Midwifery and Allied Health Professions (NMAHP) Research Unit, Glasgow Caledonian University, Glasgow, UK.
¹⁰ Tufts Medical Center, Tufts Clinical and Translational Science Institute, Boston, MA, USA.
¹¹ Tufts Medical Center, Institute for Clinical Research and Health Policy Studies, Boston, MA, USA.
¹² Department of Internal Medicine, American University of Beirut, Beirut, Lebanon.
¹³ Department of Health Research Methods, Evidence, and Impact (HEI), McMaster University, Hamilton, ON, Canada.
¹⁴ Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, ON, Canada.
¹⁵ Department of Anesthesia, McMaster University, Hamilton, ON, Canada.
¹⁶ Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
¹⁷ Biostatistics Unit, Father Sean O'Sullivan Research Centre, St Joseph's Healthcare, Hamilton, ON, Canada.
¹⁸ Centre for Development of Best Practices in Health (CDBPH), Yaoundé Central Hospital, Yaoundé, Cameroon.
¹⁹ Division of Epidemiology and Biostatistics, Department of Global Health, Stellenbosch University, Cape Town, South Africa.
²⁰ Weill Cornell Medicine -Qatar, Doha, Qatar.
²¹ Canadian Council on Animal Care, Ottawa, Canada.
²² Department of Research in Biomedicine and Health, Center for Evidence-Based Medicine, University of Split School of Medicine, Split, Croatia.
²³ Cochrane, St Albans House, Haymarket, London, 57-59, UK.
²⁴ Hôpital Montfort, Ottawa, ON, Canada.
²⁵ South African Medical Research Council, Cape Town, South Africa.
²⁶ Centre for Homelessness Impact, London, UK.
²⁷ Director Guidelines and Care Pathways, INEAS (National Authority for Assessment and Accreditation in Healthcare), Tunis, Tunisia.
²⁸ Meta-Research and Evidence Synthesis Unit, The George Institute for Global Health, New Delhi, India.
²⁹ Crowe Associates, Thame, UK.
³⁰ Becaris Publishing Limited, Royston, UK.
³¹ Ministry of Health, Cross River State, Calabar, Nigeria.
³² Cumming School of Medicine, University of Calgary, Alberta Health Services, Calgary Zone, Canada.
³³ Center for Advanced Studies in Biomedical Innovation Law (CeBIL), Faculty of Law, Copenhagen University, Copenhagen, Denmark.
³⁴ School of Public Health, Bielefeld University, Bielefeld, Germany.
³⁵ Department of Biomedical Sciences for Health, University of Milan, Milan, Italy.
³⁶ Departments of Family Medicine and Epidemiology and Biostatistics, Western University, London, Canada.
³⁷ Department of Family Medicine, University of Ottawa, Ottawa, Canada.
³⁸ Clinical Epidemiology and of Medicine, WHO Collaborating Centre for Infectious Diseases, Research Methods and Recommendations, Hamilton, Canada.
³⁹ Department of Health Research Methods, Evidence, and Impact, Cochrane Canada and McMaster GRADE Centre, McMaster University, Hamilton, Canada.
⁴⁰ Department of Medicine, Faculty of Medicine, University of Ottawa, Ottawa, Canada.
⁴¹ Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Canada.
⁴² School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, Ottawa, Canada.
⁴³ WHO Collaborating Centre for Knowledge Translation and Health Technology Assessment in Health Equity, Bruyère Research Institute, Ottawa, Canada.

Abstract

Established in 2015, the Multi-Stakeholder Engagement (MuSE) Consortium is an international network of over 120 individuals interested in stakeholder engagement in research and guidelines. The MuSE group is developing guidance for stakeholder engagement in the development of health and healthcare guideline development. The development of this guidance has included multiple meetings with stakeholders, including patients, payers/purchasers of health services, peer review editors, policymakers, program managers, providers, principal investigators, product makers, the public, and purchasers of health services and has identified a number of key issues. These include: (1) Definitions, roles, and settings (2) Stakeholder identification and selection (3) Levels of engagement, (4) Evaluation of engagement, (5) Documentation and transparency, and (6) Conflict of interest management. In this paper, we discuss these issues and our plan to develop guidance to facilitate stakeholder engagement in all stages of the development of health and healthcare guideline development.

Keywords: Guideline development; Patient and public involvement; Stakeholder engagement.

Plain language summary

A group of international researchers, patient partners, and other stakeholders are working together to create a checklist for when and how to involve stakeholders in health guideline development. Health guidelines include clinical practice guidelines, which your healthcare provider uses to determine treatments for health conditions. While working on this checklist, the team identified key issues to work on, including: (1) Definitions, roles, and settings (2) Stakeholder identification and selection (3) Levels of engagement, (4) Evaluation of engagement, (5) Documentation and transparency, and (6) Conflict of interest management. This paper describes each issue and how the team plans to produce guidance papers to address them.