Practical Guidance for Involving Stakeholders in Health Research
Stakeholder engagement is increasingly common in health research, with protocols for engaging multiple stakeholder groups becoming normative in patient-centered outcomes research. Previous work has focused on identifying relevant stakeholder groups with whom to work and on working with stakeholders in evidence implementation. This paper draws on the expertise of a team from four countries—Canada, Australia, the UK, and the USA—to provide researchers with practical guidance for carrying out multi-stakeholder–engaged projects: we present a list of questions to assist in selecting appropriate roles and modes of engagement; we introduce a matrix to help summarize engagement activities; and we provide a list of online resources. This guidance, matrix, and list of resources can assist researchers to consider more systematically which stakeholder groups to involve, in what study roles, and by what modes of engagement. By documenting how stakeholders are paired up with specific roles, the matrix also provides a potential structure for evaluating the impact of stakeholder engagement.
KEY WORDSstakeholder engagement patient engagement patient-centered outcomes research research design international health
The authors wish to thank Amanda Borsky, Angela Coulter, Zoë Gray, Jeanne-Marie Guise, Sophie Hill, Joan Powell, Laurel Pracht, Beverly Rogers, and Beverly Shea for sharing resources from a variety of countries and for their detailed reviews of an earlier version of this manuscript. We thank MuSE project manager Jennifer Vincent for keeping this work on track and RAND colleague Kristin Sereyko for preparing the manuscript for publication.
This paper has not been presented at any previous conferences.
Compliance with Ethical Standards
Conflict of Interest
RG-S is President of Healthcare Research Associates, a for-profit consultancy based in Chicago, IL, that specializes in patient engagement in research. RG-S holds a contract with Boehringer Ingelheim. SC is a principal with Crowe Associates Limited, a for-profit company registered in England and Wales that specializes in patient and public involvement in research. SG’s spouse is a salaried employee of Eli Lilly and Company; SG owns stock in the company and has accompanied his spouse on company-sponsored travel. All other authors declare no conflicts of interest specific to this manuscript.
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