Early-career researchers’ views on ethical dimensions of patient engagement in research image

BMC Medical Ethics BMC series, 2018 19:21
Jean-Christophe Bélisle-Pipon (Visiting Researcher) Geneviève Rouleau and Stanislav Birko

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Increasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research (PER) is an ethical imperative. Yet there is relatively little empirical data on ethical issues associated with PER.

If PER is itself an ethical imperative, it is vital to establish clear ethical standards and to train and support the PER community to identify and resolve ethical issues. Our study panelists called for clearer ethical guidelines, especially from those involved in the PER ecosystem (funding agencies, universities, research networks, methodological clusters, etc.). Such resources might include advice on best ethical practices for patient inclusion in research teams, and guidelines on accountability, research integrity, and avoiding instrumentalization of patients and funding. These guidelines would benefit all actors involved in PER.

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