Engaging Patients and Other Non-Researchers in Health Research: Defining Research Engagement
With the increase in patient and consumer activism through the late twentieth century and into this century, patient roles in research evolved into a new model of research engagement, with patients serving as active advisors and co-leading or leading clinical research. By requiring active engagement of patients and other stakeholders, several government research funders have advanced this model, particularly in Canada, the United States (US), United Kingdom (UK), and Australia. A consortium of individuals from these countries formed a Multi-Stakeholder Engagement (MuSE) consortium to examine critical issues in engaged research, establish consensus on definitions, and provide guidance for the field, beginning with an overview of how to involve stakeholders in health research (Concannon et al. J Gen Intern Med. 2019;34(3):458-463) and continuing here with an examination of definitions of research engagement. The political and advocacy roots of engaged research are reflected in definitions. Engagement is conceptualized with reference to research project goals, from informing specific clinical decisions to informing health-system level decisions. Political and cultural differences across countries are evident. Some of these government funders focus on empirical rather than ethical rationales. In countries with centralized health technology assessment, the link between societal values and engaged research is explicit. Ethical rationales for engagement are explicit in most of the published literature on research engagement. Harmonization of definitions is recommended so that research engagement elements, methods, and outcomes and impacts can be clearly examined and understood, and so that the field of research engagement can proceed from a clear conceptual foundation. Specific recommendations for terminology definitions are provided. Placing engaged research on a continuum from specific clinical decisions to more global public and social justice concerns clarifies the type of engaged research, supports appropriate comparisons, and improves the rigor of engaged research methods. The results help identify knowledge gaps in this growing field.
KEY WORDSstakeholder engagement patient engagement international health patient-centered outcomes research
The authors wish to thank MuSE project manager Jennifer Vincent and members of the Muse Working Group 1: Arnav Agarwal; Pauline Campbell; Rachel Churchill; Ian Graham; Sean Grant; Vittal Katikireddi; Claire Kendall; Lyuba Lytvyn; Pua Motu’apuaka Makalapua; Jennifer Petkovic; Kevin Pottie; Alex Pollock; Alison Riddle; Rosiane Simeon; Annie Synnot; Ellen Tambor; Vivian Welch.
Compliance with Ethical Standards
Conflict of Interest
SCM is a member of the PCORI Methodology Committee. TC worked with PCORI under contract within the prior 3 years. LF was employed by PCORI through 2018. All other authors declare no conflicts of interest specific to this manuscript.
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