Engaging Patients and Other Non-Researchers in Health Research: Defining Research Engagement
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RAND Corporation, Washington, DC, USA; 2Department of Statistics, College of Science, Virginia Tech, Blacksburg, VA, USA; 3Departments of Obstetrics and Gynecology, Medical Informatics & Clinical Epidemiology, Emergency Medicine, Oregon Health & Science University School of Medicine and the OHSU-PSU School of Public Health, Portland, OR, USA; 4School of Rehabilitation Therapy, Queen’s University, Kingston, ON, Canada; 5The RAND Corporation, Boston, MA, USA; 6Canada Research Chair in Health Equity, University of Ottawa Centre for Global Health, Ottawa, ON, Canada.
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
Prior presentations This paper has not been presented at any previous conferences. Electronic supplementary material The online version of this article (https://doi.org/10.1007/s11606-019-05436-2) contains supplementary material, which is available to authorized users. Received November 27, 2018 Revised April 24, 2019 Accepted September 18, 2019
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
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