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President's Advisory Commission On
Quality in the Health Care Industry


Executive Summary

Preamble

Chapter One: Information Disclosure

Chapter Two: Choice of Providers and Plans

Chapter Three: Access to Emergency Services

Chapter Four: Participation in Treatment Decisions

Chapter Five: Respect and Nondiscrimination

Chapter Six: Confidentiality of Health Information

Chapter Seven: Complaints and Appeals

Chapter Eight: Consumer Responsibilities


Consumer Bill of Rights and Responsibilities
Executive Summary

The Advisory Commission on Consumer Protection and Quality in the Health Care Industry was appointed by President Clinton on March 26, 1997, to "advise the President on changes occurring in the health care system and recommend 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 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, health care providers, health plans, State and local governments, and health care quality experts. The Commission has four 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 eight areas of consumer rights and responsibilities adopted by the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry:

  1. Information Disclosure Consumers have the right to receive accurate, easily understood information and some require assistance in making informed health care decisions about their health plans, 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.

       

    • Health care 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.

     

  2. 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, 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 seven 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 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. 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.

  3. 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.

    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.

     

  4. 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, health care 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 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.

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

  5. 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.
  6. Ensure 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.
  7. Be prohibited from penalizing or seeking retribution against health care professionals or other health workers for advocating on behalf of their patients.
  8. Respect and Nondiscrimination Consumers have the right to considerate, respectful care from all members of the health care system at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality health care system.
    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 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.
  9. 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.

    In order to ensure this right:

  10. With very few exceptions, individually identifiable health care 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.
  11. In addition, disclosure of individually identifiable health care 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 health care research for which a institutional review board has determined anonymous records will not suffice, investigation of health care fraud, and public health reporting.
  12. To the maximum feasible extent in all situations, nonidentifiable health care 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.
  13. Complaints and Appeals All 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.

    Internal appeals systems should include:

  14. 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.
  15. 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).
  16. A claim review process conducted by health care 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.
  17. 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.
  18. Reasonable processes for resolving consumer complaints about such issues as waiting times, operating hours, the demeanor of health care personnel, and the adequacy of facilities.

    External appeals systems should:

  19. Be available only after consumers have exhausted all internal processes (except in cases of urgently needed care).
  20. 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.
  21. Be conducted by health care 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.
  22. Follow a standard of review that promotes evidence-based decisionmaking and relies on objective evidence.
  23. 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).
  24. 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:
  25. Take responsibility for maximizing healthy habits, such as exercising, not smoking, and eating a healthy diet.
  26. Become involved in specific health care decisions.
  27. Work collaboratively with health care providers in developing and carrying out agreed-upon treatment plans.
  28. Disclose relevant information and clearly communicate wants and needs.
  29. Use the health plan's internal complaint and appeal processes to address concerns that may arise.
  30. Avoid knowingly spreading disease.
  31. Recognize the reality of risks and limits of the science of medical care and the human fallibility of the health care professional.
  32. Be aware of a health care provider's obligation to be reasonably efficient and equitable in providing care to other patients and the community.
  33. 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.
  34. Show respect for other patients and health workers.
  35. Make a good-faith effort to meet financial obligations.
  36. Abide by administrative and operational procedures of health plans, health care providers, and Government health benefit programs.
  37. Report wrongdoing and fraud to appropriate resources or legal authorities.

Consumer Bill of Rights and Responsibilities
Preamble

American consumers and their families are experiencing an historic transition of the U.S. system of health care financing and delivery. In establishing the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, President Clinton asked that it advise him "on changes occurring in the health care system and recommend 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 effort, the President has asked the Commission to draft a Consumer Bill of Rights and Responsibilities.

This Commission includes 34 members from a wide variety of backgrounds including consumers, business, labor, health care providers, health plans, State and local governments, and health care quality experts. We hope our diversity of interests and backgrounds will make our recommendations more valuable to those who consider them.

This is an appropriate time to reexamine and reconsider the methods by which our Nation and the health care industry establish and protect the rights and identify the responsibilities of those people who use the health care system. The Commission believes it is essential to preserve those elements of the emerging system that have a positive impact on the quality of care as well as the cost and availability of health insurance coverage.

Development of a Consumer Bill of Rights and Responsibilities is an important step forward for all those involved in the health care system. Consumers, health care professionals, administrators of health care facilities, and those who operate health plans will benefit from a clear set of unifying standards. The 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 shared responsibilities of each of these participants in a system that promotes quality improvement.

The work of this Commission builds on the efforts of many others. The Commission reviewed dozens of proposals prepared and released by a variety of organizations that have addressed the rights, responsibilities, and protection of consumers. We have heard public testimony from dozens of individuals and organizations. We are grateful for their contributions.

The Consumer Bill of Rights and Responsibilities charts a course for the continued enhancement of health systems and processes that serve to protect consumers and ensure quality. While the rights and responsibilities included in this report are intended to apply to all consumers and participants in the health care system, the Commission recognizes that the strength of these protections will grow over time as the capabilities of the health care industry become more sophisticated. Certain portions of the industry will require additional time to make these adjustments, but the Commission intends that the bulk of its recommendations be put in place within the next 3 years.

The Consumer Bill of Rights and Responsibilities was first drafted by the Subcommittee on Consumer Rights, Protections, and Responsibilities. The Subcommittee met in open session on seven separate occasions, and the Commission met six times during that same time period. The Subcommittee considered background papers on each topic, heard public testimony on most topics, and considered two or three drafts of each chapter. At each point in that process, the Subcommittee briefed the full Commission on its work and received feedback on those issues. The Commission also has considered draft chapters and revised drafts reflecting the input of its members. Throughout this process, the Subcommittee and the Commission have operated on a consensus basis that has allowed any member to place an issue before the respective body for consideration. The list of issues was refined to reflect the discussions of the Subcommittee and the Commission. The final product reflects the areas of overall agreement expressed by Commission members.

Objectives of a Consumer Bill of Rights and Responsibilities

The Consumer Bill of Rights and Responsibilities is intended to accomplish three major goals.

First, 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.

Second, to reaffirm the importance of a strong relationship between patients and their health care professionals.

Third, 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.

  Guiding Principles for the Consumer Bill of Rights and Responsibilities

The work of the Commission was guided by the following principles:

  All consumers are created equal. The work of this Commission in establishing a Bill of Rights and Responsibilities must apply to all consumers. This includes all beneficiaries of such public programs as Medicare, Medicaid, the Department of Veterans Affairs, and the Department of Defense, as well as Federal, State, and local government employees. It also includes all those who have private insurance, including those who purchase their own insurance, those who work for companies that have self-funded health plans, and those who work for companies that purchase insurance for their employees and dependents. And, finally, to the extent possible, these rights should be accorded to those who have no health insurance but use the health care system.

Quality comes first. The first question we asked ourselves in each circumstance was: Will this improve the quality of care and of the system that delivers that care? Sometimes this led us to reject policy options that we believe could hinder the progress our Nation has made toward a health care system that is focused on improving quality through accountable organized systems.

Preserve what works. There are elements of managed care and of indemnity coverage that must be changed to protect the rights of consumers. But there also are elements of each system that have improved quality and expanded access. We have tried to make sure that we preserve what works while we address areas that can and should be improved.

Costs matter. Although a comprehensive cost-analysis was not performed for this Bill of Rights and Responsibilities, the Commission has sought to balance the need for stronger consumer rights with the need to keep coverage affordable. We recognize that, in some circumstances, rights may create additional costs for employers; health plans; Federal, State, and local governments; and consumers. We also recognize that ultimately consumers can bear these costs in the form of lower wages, higher prices, higher taxes, or reduced benefits in other areas. The Commission believes some components of the Bill of Rights may also enhance the efficiency and effectiveness of the health care marketplace. While these efficiencies cannot be well calculated, they may help to offset some cost increases. The Commission has attempted to weigh these factors carefully and support recommendations that may prompt additional spending in cases where such spending may represent an investment in higher quality health care and better health outcomes.

Goals for Consumer Protection in a Quality-Focused Health Care System

A Consumer Bill of Rights and Responsibilities is, by its nature, a snapshot of what is needed at a particular time. The rights enumerated in this report are intended to move the health care system in a direction that is consistent with a system of health care delivery that is focused on obtaining the highest quality and best outcome for consumers and their families. In that light, the Commission has identified a series of goals for the continued reform of the American health care system that will maximize consumer rights in a system that focuses on quality.

Health coverage is the best consumer protection. A health care system that leaves more than 41 million Americans without health coverage cannot adequately protect the rights of consumers and their families. The fact that so many Americans live day in and day out without the security that health coverage provides is intolerable. Recent trends reported by the U.S. Census Bureau that the number of uninsured Americans rose by one million between 1996 and 1997 are cause for great concern. Moreover, the continued existence of a large group of Americans without health insurance increases the costs paid by those who have insurance as uncovered expenses are shifted to other purchasers. Efforts by Federal and State governments to expand the number of children who are insured are encouraging and should be strengthened. Similar efforts should be extended to other segments of the population so that all Americans are covered.

Consumers faced with catastrophic illness require assistance. Each year, an estimated 1,500 to 2,500 Americans lose their private health insurance coverage because their medical expenses exceed a lifetime limit included in their health insurance policy. Many of these consumers must exhaust their family savings before becoming eligible for Medicaid or other forms of public assistance. This creates a tremendous hardship on these individuals and their families. Employers, health plans, and others should seriously consider taking steps to ease this burden by (1) eliminating or increasing lifetime limits, (2) expanding the use of high-risk pools to provide immediate coverage at the time consumers reach a lifetime limit, or (3) offering supplemental coverage for workers who wish to increase their limits.

Coverage must be made affordable for all consumers, employers, and other purchasers. The recent moderation in health care costs is promising and has been a contributing factor in the slowing of insurance coverage losses. Employers, health plans, and Federal and State governments should be applauded for their efforts to make coverage more affordable for more Americans. Recent projections for 1998 are less favorable. History makes clear that we cannot assume that costs will remain under control without continued cost containment.

Vulnerable groups require special attention. Many consumers are, for reasons beyond their control, more vulnerable than others to losing their coverage or experiencing significant gaps in their coverage. Individuals with mental or physical disabilities, low-income individuals, children, non-English-speaking consumers, and others require considerable attention by decisionmakers at all levels of the system. Enactment of the Americans with Disabilities Act of 1990, the Health Insurance Portability and Accountability Act of 1996, and the Mental Health Parity Act of 1996 were important steps to protect these consumers. Further steps can and should be taken.

Small purchasers need assistance. The owners of small businesses, the self-employed, and those who purchase insurance in the individual market continue to have great difficulty finding and maintaining affordable health care coverage. For a variety of reasons, insurance premiums are higher for small firms relative to the benefits they are able to purchase, and some small firms are unable to purchase insurance at all. In its final report, the Commission intends to offer several recommendations to help ameliorate some of these effects, including voluntary approaches for expanding insurance pools and for adjusting payment systems to reflect the greater risk inherent in small group and individual markets.

Consumer participation in clinical research. The national investment in clinical research has led to breakthrough advances in diagnosis, prevention, and treatment of illness and disability that have lengthened and improved the quality of life for millions of consumers while also achieving significant cost savings to the health care industry. Consumer participation in clinical research through their inclusion in clinical trials is vitally important not only to continued advancement and innovation in medical care but to the often life-threatening nature of the conditions affecting such consumers. The Commission encourages the ongoing efforts by researchers, health plans, employers, public purchasers, and others to resolve impediments to consumer participation in clinical trials and urges participants to reach agreement on an appropriate sharing of costs and responsibilities related to such trials.

The Commission does not, in this report, speak to the issues of implementation or enforcement of the Consumer Bill of Rights and Responsibilities. The rights enumerated in this report can be achieved in several ways including voluntary actions by health plans, purchasers, facilities, and providers; the effects of market forces; accreditation processes; as well as State or Federal legislation or regulation. In its final report to the President, the Commission intends to speak to the optimal methods for implementing and enforcing these rights through one or more of these approaches.

Finally, the Commission believes that the American people should have access to health care that is of high quality, evidence-based, safe, free of errors, and is available to all Americans regardless of ability to pay. Progress, over time, will require changes that must be made prudently, realistically, and with due regard to the needs of all stakeholders in the system. This Consumer Bill of Rights and Responsibilities specifies improvements that we believe are achievable now and in the next several years. It acquires even more meaning in the context of a broader overarching commitment to ensure that full access to high-quality health care will eventually be available to all Americans.


Consumer Bill of Rights and Responsibilities
Chapter One
Information Disclosure

Statement of the Right: Consumers have the right to receive accurate, easily understood information and some require assistance in making informed health care decisions about their health plans, professionals and facilities.

This information should include: