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Bystander Ethics and Good Samaritanism: A Paradox for Learning Health Organizations

Abstract: In 2012, a U.S. Institute of Medi­cine report called for a different approach to health care: “Left unchanged, health care will continue to underperform; cause unnecessary harm; and strain national, state, and family budgets.” The answer, they suggested, would be a “continuously learning” health system. Ethicists and researchers urged the creation of “learning health organizations” that would integrate knowledge from patient-care data to continuously im­prove the quality of care. Our experience with an ongoing re­search study on atrial fibrillation—a trial known as IMPACT-AFib—gave us some insight into one of the challenges that will have to be dealt with in creating these organizations. Although the proposed educational intervention study placed no restrictions on what pro­viders and health plans could do, the oversight team argued that the ethical principle of beneficence did not allow the researchers to be “bystanders” in relation to a control group receiving suboptimal care. In response, the re­searchers designed a “workaround” that allowed the project to go for­ward. We believe the experience sug­gests that what we call “bystander ethics” will create challenges for the kinds of quality improvement re­search that learning health organizations are designed to do.

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