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March 3, 1999

A Patients' Bill of Rights: The Medical Student's Role

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Copyright 1999 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.1999American Medical AssociationThis is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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JAMA. 1999;281(9):857. doi:10.1001/jama.281.9.857-JMS0303-3-1

Benjamin Disraeli explained that change is inevitable in a progressive country.1 Over the last few decades, the US health care system has witnessed dramatic progress in medical technologies and treatment, a dramatic rise in health care costs, and a dramatic shift in the system to managed care. Since 1990, the number of US citizens enrolled in managed care has nearly doubled. Now, a majority receive health care benefits from a managed care organization.2

When done right, managed care can provide a seamless system of care delivery from prevention to primary care to patient management. But managed care has also produced frustrations and even tragic cases where care was delayed or denied.3 A public consensus has emerged for policymakers to address what is wrong with managed care while protecting what is right: care that is more accessible and affordable.

To begin addressing these concerns, in March 1997 President Clinton established the Advisory Commission on Consumer Protection and Quality in the Health Care Industry. He asked Secretary of Labor Alexis Herman, and me, as Secretary of Health and Human Services, to co-chair the committee. The 34-member panel brought together health care providers and patients, business and labor leaders, state and local government representatives, and health care quality experts. The Commission was charged with recommending steps to ensure health care quality and to protect consumers and providers in the health care system.

In its final report,1 published in March 1998, the Commission outlined specific steps to guarantee health care quality. It included measures that would prevent overuse and underuse of services, as well as reduce injuries and errors. The Commission also proposed a Patients' Bill of Rights.

The Patients' Bill of Rights empowers doctors to communicate freely about treatment options, alternatives, risks, benefits, and consequences without "gag rules" in their contractual agreements.

It also insists on mutual respect and nondiscrimination in the health care industry and in insurance enrollment regardless of race, sex, age, sexual orientation, or genetic makeup.

Consumers have the right to accurate, easily understood information to make knowledgeable choices about their health care: what care is covered and what is excluded, which doctors are in a plan's network, and how consumers can appeal a decision when coverage is denied. Consumers also have the right to be seen by a specialist when needed, and the right to emergency care when and where the need arises.

Soon after receiving the Commission's interim report,4 the President signed an executive memorandum (W. J. Clinton, written communication, February 1998) applying the Patients' Bill of Rights to all those enrolled in a federal health insurance plan. That guarantee covered 80 million people, one third of all Americans, including federal employees, veterans, military personnel, and Medicare and Medicaid enrollees. The administration believes that step alone will begin to transform the health insurance industry. Now the nation's challenge is to find a way to guarantee basic patients' rights to every American.

The President and I have both called on Congress to pass federal legislation to extend the Patients' Bill of Rights to all private health plans. There is a bipartisan consensus in Congress on the need for action to guarantee patients rights, but there are differences about what rights to guarantee. The Clinton Administration believes that to be effective in addressing the needs of patients and providers, patients' rights legislation should include a number of basic criteria (Table 1).

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Table. The Clinton Administration's Essential Rights for Patients

No matter what the outcome in Congress, clearly the process of guaranteeing patients' rights is at the beginning, not the end. Making these rights a reality for every consumer across the United States will require the commitment of the nation's current, and future, health care leaders. Moreover, it will require that students continue to remain informed, concerned, and engaged in this debate because nobody will have more of a challenge and opportunity to infuse patients' rights into the health care system.

Knowles  E The Oxford Dictionary of Phrase, Saying, & Quotation.  New York, NY Oxford University Press1997;
The President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry, Quality First: Better Health Care for All Americans. Final Report to the President of the United States. Washington, DC The President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry1998;
Hankins  J Testimony.  Presented at: Bicameral hearing on the need to pass patient protection legislation; July 15, 1998 Washington, DC
The President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry, Consumer Bill of Rights and Responsibilities. Report to the President of the United States. Washington, DC The President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry1997;