Consumer Bill of Rights and Responsibilities

Report to the President of the United States

Prepared by the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, November 1997

Executive Summary

The Advisory Commission on Consumer Protection and Quality in the Healthcare Industry was appointed by President Clinton on March 26, 1997, to "advise the President on changes occurring in the healthcare system and recommend measures as may be necessary to promote and assure health care quality and value, and protect consumers and workers in the healthcare system." As part of its work, the President asked the Commission to draft a "consumer bill of rights."

The Commission includes 34 members and is co-chaired by The Honorable Alexis M. Herman, Secretary of Labor, and The Honorable Donna E. Shalala, Secretary of Health and Human Services. Its members include individuals from a wide variety of backgrounds including consumers, business, labor, healthcare providers, health plans, state and local governments, and healthcare quality experts. The Commission has 4 Subcommittees: Consumer Rights, Protections, and Responsibilities; Quality Measurement; Creating a Quality Improvement Environment; and Roles and Responsibilities of Public and Private Purchasers and Quality Oversight Organizations. The Commission and its Subcommittees meet monthly in public.

Following is a summary of the 8 areas of consumer rights and responsibilities adopted by the President's Advisory Commission on Consumer Protection and Quality in the Healthcare Industry:

I. Information Disclosure

Consumers have the right to receive accurate, easily understood information and some require assistance in making informed healthcare decisions about their health plans (1), professionals, and facilities.

This information should include:

• 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 and board certification and recertification; years of practice; experience performing certain procedures; and comparable measures of quality and consumer satisfaction.
• Healthcare facilities: Experience in performing certain procedures and services; accreditation status; comparable measures of quality and worker and consumer satisfaction; procedures for resolving complaints; and community benefits provided.

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

II. Choice of Providers and Plans

Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality health care.

To ensure such choice, health plans should provide 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. Plans also should establish and maintain adequate arrangements to ensure reasonable proximity of providers to the business or personal residence of their members.
• Access to Qualified Specialists for 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 healthcare providers -- for the provision of covered care necessary to provide routine and preventative women's healthcare 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. Providers who continue to treat such patients must accept the plan's rates as payment in full, provide all necessary information to the plan for quality assurance purposes, and promptly transfer all medical records with patient authorization during the transition period.

Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance products. Small employers should be provided with greater assistance in offering their workers and their families a choice of health plans and products.

III. Access to Emergency Services

Consumers have the right to access emergency healthcare 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.

To ensure this right:

• Health plans should educate their members about the availability, location, and appropriate use of emergency and other medical services; cost-sharing provisions for emergency services; and the availability of care outside an emergency department.
• Health plans using a defined network of providers should cover emergency department screening and stabilization services both in network and out of network without prior authorization for use consistent with the prudent layperson standard. Non-network providers and facilities should not bill patients for any charges in excess of health plans' routine payment arrangements.
• Emergency department personnel should contact a patient's primary care provider or health plan, as appropriate, as quickly as possible to discuss follow-up and post-stabilization care and promote continuity of care.

IV. 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.

In order to ensure consumers' right and ability to participate in treatment decisions, healthcare professionals should:

• Provide patients with easily understood information and opportunity to decide among treatment options consistent with the informed consent process. Specifically,
  • 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, including those alternative treatments that are self-administered.
  • Discuss all risks, benefits and consequences of 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 patients and/or their designated representatives consistent with the informed consent process.

To facilitate greater communication between patients and providers, healthcare providers, facilities and plans should:

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

V. Respect and Nondiscrimination

Consumers have the right to considerate, respectful care from all members of the healthcare system at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system.

Consumers must not be discriminated against in the delivery of healthcare 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 who are 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.

VI. Confidentiality of Health Information

Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records.

In order to ensure this right:

• With very few exceptions, individually identifiable healthcare information can be used without written consent for health purposes only, including the provision of health care, payment for services, peer review, health promotion, disease management and quality assurance.
• In addition, disclosure of individually identifiable healthcare information without written consent should be permitted in very limited circumstances where there is a clear legal basis for doing so. Such reasons include: medical or healthcare research for which a institutional review board has determined anonymous records will not suffice, investigation of healthcare fraud and public health reporting.
• To the maximum feasible extent in all situations, nonidentifiable healthcare information should be used unless the individual has consented to the disclosure of individually identifiable information. When disclosure is required, no greater amount of information should be disclosed than is necessary to achieve the specific purpose of the disclosure.

VII. Complaints and Appeals

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

Internal appeals systems should include:

• Timely written notification of a decision to deny, reduce or terminate services or deny payment for services. Such notification should include an explanation of the reasons for the decisions and the procedures available for appealing them.
• Resolution of all appeals in a timely manner with expedited consideration for decisions involving emergency or urgent care consistent with time frames consistent with those required by Medicare (i.e., 72 hours).
• A claim review process conducted by healthcare professionals who are appropriately credentialed with respect to the treatment involved. Reviews should be conducted by individuals who were not involved in the initial decision.
• Written notification of the final determination by the plan of an internal appeal that includes information on the reason for the determination and how a consumer can appeal that decision to an external entity.
• Reasonable processes for resolving consumer complaints about such issues as waiting times, operating hours, the demeanor of healthcare personnel, and the adequacy of facilities.

External appeals systems should:

• Be available only after consumers have exhausted all internal processes (except in cases of urgently needed care).
• Apply to any decision by a health plan to deny, reduce or terminate coverage or deny payment for services based on a determination that the treatment is either experimental or investigational in nature; apply when such a decision is based on a determination that such services are not medically necessary and the amount exceeds a significant threshold or the patient's life or health is jeopardized (2).
• Be conducted by healthcare professionals who are appropriately credentialed with respect to the treatment involved and subject to conflict-of-interest prohibitions. Reviews should be conducted by individuals who were not involved in the initial decision.
• Follow a standard of review that promotes evidence-based decision making and relies on objective evidence.
• Resolve all appeals in a timely manner with expedited consideration for decisions involving emergency or urgent care consistent with time frames consistent with those required by Medicare (i.e., 72 hours).

VIII. Consumer Responsibilities

In a healthcare 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.
• Become involved in specific healthcare decisions.
• Work collaboratively with healthcare 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 healthcare professional.
• Be aware of a healthcare provider's obligation to be reasonably efficient and equitable in providing care to other patients and the community.
• Become knowledgeable about his or her 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, healthcare providers, and government health benefit programs.
• Report wrongdoing and fraud to appropriate resources or legal authorities.

(1) The term "health plans" is used throughout this report and refers broadly to indemnity insurers, managed care organizations (including health maintenance organizations and preferred provider organizations), self-funded employer-sponsored plans, Taft-Hartley trusts, church plans, association plans, state and local government employee programs and public insurance programs (i.e., Medicare and Medicaid).

(2) The right to external appeals does not apply to denials, reductions or terminations of coverage or denials of payment for services that are specifically excluded from the consumer's coverage as established by contract.