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Bringing Patients Into Health System Change

February 5th, 2013

Editor’s note: For more on the attitudes of Americans toward medical care and empowering patients to be active participants in their own care, see the February issue of Health Affairs, “New Era Of Patient Engagement.”

The attention now devoted to defining the proper role of patients and consumers in clinical decision-making is unusual, both in terms of who is addressing the issue and the intensity of the concern. Once, it was physicians and bioethicists who took the lead; now it is health policy analysts and health care administrators. Their aims go well beyond improving doctor-patient communication or promoting patient autonomy. The primary goal is to enlist patients in the effort to bring fundamental change to health care delivery.

The obligations conferred upon or assumed by patients have changed dramatically over the past half-century. Well into the 1950s, prevailing norms reflected Talcott Parsons’ formulation of the sick role. Patients were duty-bound to seek medical care when ill and follow physicians’ orders. In the 1970s and ‘80s, the new field of bioethics successfully challenged this paradigm, demanding that physicians obtain patients’ informed consent for all interventions, particularly in end-of-life decision-making.

Current expectations are different, less concerned with bioethical principles like autonomy and more committed to the idea that unless patients are genuine partners in medical decision making, altering the health care delivery system is not likely to succeed. The goal is not to advance patient rights but to transform patterns of care.

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