A framework for patient and consumer engagement in evidence generation
Alison Rein and Others
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Mounting evidence suggests that there are benefits to actively involving patients and consumers in their health and care. There is also growing interest in engaging patients and consumers more actively in the research process. Comparative effectiveness research (CER), patient-centered outcomes research (PCOR) and quality improvement (QI) all offer opportunities to engage patients in generating information that can be used to inform treatment decisions, as well as determinations of how and where care is delivered. This interactive resource, based on work conducted by AcademyHealth under the auspices of the Electronic Data Methods (EDM) Forum, outlines key opportunities for engagement- extending beyond the traditional research process to involve patients and consumers in the development of data resources and other infrastructure needed to better support more relevant research (i.e., research that they perceive as helping to inform their care and health). The framework also proposes a set of activities to facilitate patient and consumer engagement in this expanded process of evidence generation.