President's Advisory Commission Releases
Consumer Bill of Rights and Responsibilities

A Presidential Advisory Commission today released a proposed Consumer Bill of Rights and Responsibilities in health care. In a report to President Clinton, the Commission said, "American consumers and their families are experiencing an historic transition of the U.S. system of health care financing and delivery."

The Commission states that a Consumer Bill of Rights and Responsibilities "can help to establish a stronger relationship of trust among consumers, health care professionals, health care institutions, and health plans by helping to sort out the responsibilities of each of these participants in a system that promotes quality improvement."

The Consumer Bill of Rights has three goals:

• To strengthen consumer confidence by assuring the health care system is fair and responsive to consumers' needs, provides consumers with credible and effective mechanisms to address their concerns, and encourages consumers to take an active role in improving and assuring their health.

• To reaffirm the importance of a strong relationship between patients and their health care professionals.

• To reaffirm the critical role consumers play in safeguarding their own health by establishing both rights and responsibilities for all participants in improving health status.

President Clinton created the Advisory Commission on Consumer Protection and Quality in the Health Care Industry on March 26, 1997, and charged it with "recommend[ing] such measures as may be necessary to promote and assure health care quality and value and protect consumers and workers in the health care system." As part of that charge, the President asked the Commission to develop a "Consumer Bill of Rights" in health care.

Co-Chaired by Secretary of Labor Alexis M. Herman and Secretary of Health and Human Services Donna E. Shalala, the Commission has 34 members, including broad-based representation from consumers, businesses, labor, health care providers, health plans, and health care quality and financing experts. Commission members have vast expertise on a wide range of health issues, including the special challenges facing rural and urban communities, children, women, older Americans, minorities, and people living with mental and physical disabilities.

In developing the Consumer Bill of Rights and Responsibilities, the Commission established a Subcommittee on Consumer Rights, Protections, and Responsibilities, which held a series of six public hearings in Washington, D.C., Burlington, Vermont, and Chicago, Illinois. The Subcommittee and the Commission heard public testimony from nearly three dozen expert witnesses and considered consumer protection proposals by nearly two dozen national and regional organizations.

The Commission also is working on a final, comprehensive report on creating a quality improvement framework for the health care industry. That report is due to President Clinton by March 30, 1998.

Free copies of the Consumer Bill of Rights and Responsibilities are available on the World Wide Web from the Commission's Website (www.hcqualitycommission.gov). To obtain a free printed copy of the report, call 1/800/732-8200 or write to Consumer Bill of Rights, Box 2429, Columbia, MD 21045-1429.

• Information Disclosure. Consumers have the right to receive accurate, easily understood information, and some consumers require assistance in making informed health care decisions about their health plans, professionals and facilities. Such information includes:
  Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints; licensure, certification, and accreditation status; comparable measures of quality and consumer satisfaction; provider network composition; the procedures that govern access to specialists and emergency services; and care management information.

  Health professionals: Education, board certification and recertification; years of practice; experience performing certain procedures; and comparable measures of quality and consumer satisfaction.

  Health care facilities: Experience in performing certain procedures and services; accreditation status; comparable measures of quality and worker and consumer satisfaction; and procedures for resolving complaints.

  Consumer Assistance Programs: Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Sponsorship that ensures accountability to the interests of consumers and stable, adequate funding are desirable characteristics of such programs.

• Choice of Providers and Plans. Consumers have the right to a choice of health care providers that is sufficient to ensure access to appropriate high-quality health care. To ensure such choice, the Commission recommends the following:
  Provider Network Adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -- including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.

  Women's Health Services. Women should be able to choose a qualified provider offered by a plan -- such as gynecologists, certified nurse midwives, and other qualified health care providers -- for the provision of covered care necessary to provide routine and preventative women's health care services.

  Access to Specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan's network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan.

  Transitional Care. Consumers who are undergoing a course of treatment for a chronic or disabling condition (or who are in the second or third trimester of a pregnancy) at the time they involuntarily change health plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days (or through completion of postpartum care) to allow for transition of care.

  Choice of Health Plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans.

• Access to Emergency Services. Consumers have the right to access emergency health care services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity -- including severe pain -- such that a "prudent layperson" could reasonably expect the absence of medical attention to result in placing that consumer's health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.

• Participation in Treatment Decisions. Consumers have the right and responsibility to fully participate in all decisions related to their health care. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators.

  Physicians and other health professionals should:

  • Provide patients with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.
  • Discuss all treatment options with a patient in a culturally competent manner, including the option of no treatment at all.
  • Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.
  • Discuss all current treatments a consumer may be undergoing.
  • Discuss all risks, benefits, and consequences to treatment or nontreatment.
  • Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions.
  • Discuss the use of advance directives -- both living wills and durable powers of attorney for health care -- with patients and their designated family members.
  • Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process.

  Health plans, providers, and facilities should:

  • Disclose to consumers factors -- such as methods of compensation, ownership of or interest in health care facilities, or matters of conscience -- that could influence advice or treatment decisions.
  • Assure that provider contracts do not contain any so-called "gag clauses" or other contractual mechanisms that restrict health care providers' ability to communicate with and advise patients about medically necessary treatment options.
  • Be prohibited from penalizing or seeking retribution against health care professionals or other health workers for advocating on behalf of their patients.

• Respect and Nondiscrimination. Consumers have the right to considerate, respectful care from all members of the health care industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality health care system. To assure that right, the Commission recommends the following:
  • Consumers must not be discriminated against in the delivery of health care services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
  • Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.

• Confidentiality of Health Information. Consumers have the right to communicate with health care providers in confidence and to have the confidentiality of their individually identifiable health care information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records.

• Complaints and Appeals. Consumers have the right to a fair and efficient process for resolving differences with their health plans, health care providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review.

• Consumer Responsibilities. In a health care system that protects consumers' rights, it is reasonable to expect and encourage consumers to assume reasonable responsibilities. Greater individual involvement by consumers in their care increases the likelihood of achieving the best outcomes and helps support a quality improvement, cost-conscious environment. Such responsibilities include:
  • Take responsibility for maximizing healthy habits, such as exercising, not smoking, and eating a healthy diet.
  • Work collaboratively with health care providers in developing and carrying out agreed-upon treatment plans.
  • Disclose relevant information and clearly communicate wants and needs.
  • Use the health plan's internal complaint and appeal processes to address concerns that may arise.
  • Avoid knowingly spreading disease.
  • Recognize the reality of risks and limits of the science of medical care and the human fallibility of the health care professional.
  • Be aware of a health care provider's obligation to be reasonably efficient and equitable in providing care to other patients and the community.
  • Become knowledgeable about their health plan coverage and health plan options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules, appropriate processes to secure additional information, and the process to appeal coverage decisions.
  • Show respect for other patients and health workers.
  • Make a good-faith effort to meet financial obligations.
  • Abide by administrative and operational procedures of health plans, health care providers, and Government health benefit programs.
  • Report wrongdoing and fraud to appropriate resources or legal authorities.

Free copies of the full report to the President on the Consumer Bill of Rights and Responsibilities are available on the World Wide Web at the White House Website (www.whitehouse.gov) or from the Commission's Website (www.hcqualitycommission.gov). To obtain a printed copy of the report, call 1/800/732-8200 or write to Consumer Bill of Rights, Box 2429, Columbia, MD 21045-1429.

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