title: The Ethical Imperative And Moral Challenges Of Engaging Patients And The Public With Evidence.
abstract: Engaging patients and the public with evidence is an ethical imperative because engagement is central to respect for persons and will likely improve health outcomes, facilitate the stewardship of resources, enhance prospects for justice, and build public trust. However, patient and public engagement is also morally complex, because evidence alone is never definitive. As patients and the public engage with evidence, value conflicts will arise and must be managed to achieve trustworthy decision making. We outline value conflicts likely to emerge in the following five settings: clinical care, health care organizations, public health, the regulatory context, and among payers. Using a variety of examples, we offer suggestions about how such conflicts may be managed, including providing more opportunities for democratic deliberation and having more explicit community discussion of how to balance personal choice and community well-being, transparent discussions of cost and quality outcomes, and greater patient engagement in community-based participatory research and the governance of learning health systems.
authors.affiliation: Mildred Z. Solomon (solomonm@thehastingscenter.org) is president of the Hastings Center, in Garrison, New York, and a professor of medical ethics in the Department of Anaesthesia and the Center for Bioethics at Harvard Medical School, in Boston, Massachusetts.
authors.forename: Mildred Z
authors.initials: MZ
authors.lastname: Solomon
authors.affiliation: Michael K. Gusmano is a research scholar at the Hastings Center and an associate professor of health policy at Rutgers University, in New Brunswick, New Jersey.
authors.forename: Michael K
authors.initials: MK
authors.lastname: Gusmano
authors.affiliation: Karen J. Maschke is a research scholar at the Hastings Center.
authors.forename: Karen J
authors.initials: KJ
authors.lastname: Maschke
mesh_terms: D016265:Conflict of Interest; D019317:Evidence-Based Medicine / Q000941:ethics*; D005260:Female; D006801:Humans; D008297:Male; D028681:Moral Obligations; D010358:Patient Participation / Q000706:statistics & numerical data*; D058991:Patient Protection and Affordable Care Act / Q000191:economics / Q000941:ethics; D011634:Public Health; D011639:Public Opinion; D011787:Quality of Health Care; D040841:Resource Allocation; D014481:United States
keywords: Cost of Health Care; Ethical Issues; Evidence-Based Medicine; Public Opinion