President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry

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:

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.


Value-based purchasing allows consumers to obtain greater value for their health care dollar by seeking higher quality care at the best price. To do this, consumers need accurate, reliable information that will allow them to assess differences in the quality and cost of health benefits plans, the health care providers who treat them, and the facilities and institutions that house them. Active and informed decisionmaking by consumers will improve the performance of the health care system, as providers seek to enhance their quality and reduce their costs in order to be more attractive to value-seeking consumers.

A more basic reason for providing consumers with information is an ethical one. Health plans, facilities, and professionals have an ethical obligation to inform consumers about how their actions can affect the consumer's life and health. Medical ethicists ground this obligation in the principle of respect for individual autonomy and individuals' right to make choices about how they receive medical care (Beauchamp and Childress, 1994).

This chapter provides a description of the types of information on health plans, health professionals, and health care facilities that should be made available to consumers either routinely or upon request. The Commission recognizes that much work remains to be done if all this information is to be readily available and understandable to consumers, specifically:

Consumers should be able to obtain other information upon request as outlined below. Plans, providers, and facilities should inform consumers that such information is available and describe how it can be obtained.

Health Plan Information

Many consumers face a choice of health plans such as an indemnity plan, an HMO, a point-of-service plan, or a preferred provider organization. Consumers' choice of a health plan has a significant impact on consumers' ability to make other choices about facilities, health professionals, and treatment options. Even in cases where consumers do not have a choice of plans, they require information on the plan in which they are enrolled to use the available services effectively.

To the extent that a right to information creates disclosure requirements for health plans, these requirements should apply equally to all types of plans (including indemnity, HMO, PPO, and POS) regardless of sponsor (e.g., such government programs as CHAMPUS, VA, FEHBP, Medicare, and Medicaid and private plans including fully funded, partially self-funded, or fully self-funded plans). If the specific information required for disclosure does not exist, or is unavailable, the consumer should be informed.

The primary responsibility of providing consumers with health plan information falls upon the plans themselves. In the case of self-insured plans, this responsibility will rest with the plan sponsor unless it is delegated or contracted to a third-party administrator.

Within the category of health plan information, one can discern four principal subcategories of information: (1) benefits, cost-sharing, and dispute resolution; (2) health plan characteristics and performance information; (3) network characteristics; and (4) care management information.

  1. Benefits, Cost-Sharing, and Dispute Resolution. Consumers should receive the following information about a health benefits plan:
    • A general summary of all covered benefits, including:
      • General limits on coverage, including any annual or lifetime limits, as well as limits for specific conditions.
      • Whether preventative services are covered.
      • Whether a drug formulary is used and, if so, how decisions are made pertaining to inclusion of drugs, particularly new drugs (including a process to consider exceptions).
      • How drugs, devices, and procedures are deemed experimental.
    • Enrollee cost-sharing, including employee or beneficiary premium contributions, deductibles, copayments, and coinsurance.
    • Type and extent of dispute resolution procedures available in the event of a dispute.

  2. Health Plan Characteristics and Performance Information. Consumers joining or considering whether or not to join a health plan should receive information about:
    • State licensure status, Federal certification, and private accreditation status (including publicly available reports).
    • Consumer satisfaction measures.
    • Clinical quality performance measures.
    • Service performance measures (e.g., waiting time to obtain an appointment with primary care providers and specialists).
    • Disenrollment rates (adjusted for involuntary disenrollment and other relevant factors).

    Additional information that should be made available upon request includes:

    • Number of years in existence.
    • Corporate form of the plan (i.e., public or private; gateway.html or for-profit ownership and management).
    • Whether the plan meets requirements (State and Federal) for fiscal solvency.
    • Whether the plan meets standards (State, Federal, and private accreditation) that assure confidentiality of medical records and orderly transfer to caregivers.

  3. Network Characteristics. It is important to provide consumers with information about the characteristics of the network and the procedures that govern its use. Consumers should receive:
    • Aggregate information on the numbers, types, board certification status, and geographic distribution of primary care providers and specialists.
    • Detailed list of names, board certification status, and geographic location of all contracting primary care providers; whether they are accepting new patients; language(s) spoken and availability of interpreter services; and whether facilities are accessible to people with disabilities.
    • Provider compensation methods, including base payment (e.g., capitation, salary, fee schedule) and additional financial incentives (e.g., bonus, withholds, etc.).
    • Rules regarding coverage of out-of-network services, and applicable rates of cost-sharing.
    • Information about circumstances under which primary care referral is required to access specialty care.
    • Information about what options exist for 24-hour coverage and whether enrollees have access to urgent care centers.

    Additional information that should be made available upon request includes:

    • Detailed list of names, board certification status, and geographic location of all contracting specialists and specialty care centers; whether they are accepting new patients; language(s) spoken and availability of interpreter services; and whether facilities are accessible to people with disabilities.
    • Detailed list of names, accreditation status, and geographic location of hospitals, home health agencies, rehabilitation and long-term care facilities; whether they are accepting new patients; language(s) spoken and availability of interpreter services; and whether they are accessible to people with disabilities.

  4. Care Management Information. Information in this category that should be available upon request includes:
    • Preauthorization and utilization review procedures followed.
    • Use of clinical protocols, practice guidelines, and utilization review standards pertinent to a patient's clinical circumstances.
    • Whether the plan has special disease management programs or programs for persons with disabilities. (This information should indicate whether these programs are voluntary or mandatory or if a significant benefit differential results.)
    • Whether a specific prescription drug is included in a formulary and procedures for considering requests for patient-specific waivers.
    • Qualifications of reviewers at the primary and appeals levels.

Health Professional Information

All consumers should receive information on:

Consumers should receive upon request the following information on health professionals:

Health Care Facility Information

Consumers should receive the following information from a health care facility:

Consumer Assistance Programs

Initial results indicate that consumer assistance programs support consumer needs for information on health plans, providers, and facilities. A loose patchwork of consumer assistance services currently exists in the public and private sectors. In the public sector, 14 State or locally based Medicaid programs now have established ombudsmen programs to assist beneficiaries with information needs. Some Medicare beneficiaries and people with chronic health problems have access to consumer assistance services through Information, Counseling, and Assistance (ICA) programs, long-term care ombudsmen programs, and protection and advocacy programs.

In the private sector, health plans often provide consumers with assistance services through customer and member service departments (Oxford Health Plans, 1997; Harvard Pilgrim Health Plan, 1997). Large group purchasers and labor unions often provide their employees with consumer assistance by organizing information on plans, educating employees about their rights, and intervening when employees have complaints about their plans (Darling, 1997).

While there are a number of sources that provide assistance to consumers, most programs target specific subpopulations and have limited funds, and hence provide a limited range of services. There are reasons to believe that consumers and other stakeholders would benefit from greater availability of consumer assistance programs that:

The challenge to crafting assistance programs for health care consumers is to ensure that such programs are not duplicative, but rather that they supplement and complement existing resources.

With regard to consumer assistance, the Commission has not addressed issues of implementation. Specifically, this is not an endorsement or a requirement for any particular form of consumer assistance programs, but lays out desirable characteristics of such programs.

Implications of the Right

Obtaining the information listed above and making it available to consumers will not, by itself, equip consumers with the knowledge and abilities required to act on this information. Discussed below are some basic considerations in making this information useful to consumers and the implications of this for key segments of the health care industry.

References and Selected Reading

Beauchamp TL, Childress JF. Principles of Biomedical Ethics (New York): Oxford University Press; 1994.

Darling H. Xerox Corporation. testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, May, 1997.

Edgman-Levitan S, Cleary S and P. "What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?" in: Jones SB, Lewin ME, editors, Improving the Medicare Market: Adding Choice and Protections, Washington, DC: National Academy Press; 1996.

Harvard Pilgrim Health Care. telephone conversation with Janice Boyce, Public Affairs Department, August 25, 1997.

Office of Technology Assessment. The Quality of Medical Care: Information for Consumers, No. OTA-H-386. Washington, DC; 1988.

Oxford Health Plans. telephone conversation with Scott Schwartz, Assistant General Counsel, August 25, 1997.

Sofaer S. "How Will We Know If We Got It Right? Aims, Benefits and Risks of Consumer Information Initiatives," The Joint Commission Journal on Quality Improvement, May 1997; 23(5):258-264.


  1. The term "health plan" 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).

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Last Revised: Wednesday, June 24, 1998