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patient engagement, public involvement, patient activations, patient-centered outcomes research


Patients are increasingly expected to take a more involved role in research. Funding for some projects now requires incorporating patients’ viewpoints or involvement in research processes. While intended to achieve commendable goals, it is important to critically assess the means used to achieve these aims. Presently, there may be issues of valuing only certain epistemologies, failing to evaluate existing programs and their impacts, marginalizing less “engaged” patients, and promoting only tokenism. These are areas that require exploration and reflection before assuming that patient engagement approaches are sufficient or the only means of incorporating patient perspectives into research.