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:

• Health plans:¹ 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.

Rationale

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:

• Detailed explanation is needed for certain types of information. Some types of information are straightforward and require no further definition (e.g., the names, board certification status, and geographic location of primary care providers in a plan's network). Other types of information would benefit from the development of more detailed explanation, such as the care management information on clinical protocols, practice guidelines, and preauthorization and utilization review standards and procedures.
• Standardized measures are needed for comparative purposes. For the information intended to support consumer decisions regarding the choice of a health benefits plan, or choice of an individual provider or facility, standardized definitions will be needed to allow for "apples to apples" comparisons.
• Ongoing development and promulgation of standardized measurement sets and instruments are needed for assessing satisfaction and quality. The Commission believes that some of the most important types of information a consumer has a right to receive fall into the categories of consumer satisfaction ratings and clinical quality performance measures for health plans, health care professionals, and facilities. For all consumers to exercise this right, processes must be put in place to create standardized performance measures. In its final report, the Commission intends to address how such a process might be established so as to build on existing efforts, encourage ongoing innovation in quality measurement, and provide the best possible information to consumers at any given time to encourage quality improvement through market-based decisions.
• Useful and appropriate reporting formats and processes are needed for consumers. Although the Commission believes that consumers should have access to pertinent information, it recognizes that caution must be taken to provide information to consumers in useful formats (e.g., summary and detailed reports, printed copy, and Internet), at appropriate times (i.e., decision points), with assistance for vulnerable groups (i.e., those who are hearing impaired or non-English speaking). These issues also will be addressed in the Commission's final report.

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

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

• Whether the health professional's ownership or affiliation arrangement with a provider group or institution would make it more likely that a consumer would be referred to particular specialists or facility or receive a particular service.
• How the provider is compensated, including base payment method (e.g., capitation, salary, fee schedule) and types of additional financial incentives (e.g., bonus, withholds).

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

• Education, board certification, and recertification status.
• Names of hospitals where physicians have admitting privileges.
• Years of practice as a physician and as a specialist if so identified.
• Experience with performing certain medical or surgical procedures (e.g., volume of care/services delivered), adjusted for case mix and severity.
• Consumer satisfaction measures.
• Clinical quality performance measures.
• Service performance measures.
• Accreditation status (if applicable).
• Corporate form of the practice (i.e., public or private, gateway.html or for-profit, ownership and management, sole proprietorship or group practice).
• The availability of translation or interpretation services for non-English speakers and people with communication disabilities.
• Any cancellation, suspension, or exclusion from participation in Federal programs or sanctions from Federal agencies; any suspension or revocation of medical licensure, Federal controlled substance license, or hospital privileges.

Health Care Facility Information

• Corporate form of the facility (i.e., public or private; gateway.html or for-profit; ownership and management; affiliation with other corporate entities).
• Accreditation status.
• Whether specialty programs meet guidelines established by specialty societies or other appropriate bodies (e.g., whether a cancer treatment center has been approved by the American College of Surgeons, the Association of Community Cancer Centers, or the National Cancer Institute).
• The volume of certain procedures performed at each facility.
• Consumer satisfaction measures.
• Clinical quality performance measures.
• Service performance measures.
• Procedures for registering a complaint and achieving resolution of that complaint.
• The availability of translation or interpretation services for non-English speakers and people with communication disabilities.
• Numbers and credentials of providers of direct patient care (e.g., registered nurses, other licensed providers, and other caregivers).
• Whether the facility's affiliation with a provider network would make it more likely that a consumer would be referred to health professionals or other organizations in that network.
• Whether the facility has been excluded from any Federal health programs (i.e., Medicare or Medicaid).

Consumer Assistance 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:

• Inspire confidence. Consumers want to know that they will be treated fairly.
• Provide a safety valve. Even in the best of systems, there will be individuals who fall through the cracks. Assistance programs provide a resource that can help such individuals resolve problems quickly and efficiently, often bridging communication failures between the consumer and the provider or health plan.
• Foster collaboration. Assistance programs should work with the array of available resources to best meet the needs of consumers.

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

• Information Should Be Useful to Consumers and Cost Effective to Obtain. Edgman-Levitan and Cleary (1996) have documented that consumers are able to evalute critical information about quality. However, research on how consumers use information to make decisions suggests that too much information can be overwhelming. In its 1988 assessment of methods for commmunicating the quality of medical care to consumers, the Office of Technology Assessment's Expert Advisory Panel concluded that "limiting information to only a few indicators of quality will probably be necessary [because] people can consider only a few items at any one time. Information is processed as a unit or chunk -- a person's processing capacity has been estimated as being anywhere from four to seven chunks" (OTA, 1988). Ongoing research must be conducted to determine what is the most effective subset of information that consumers can use. Finally, while consumers clearly have a right to information, it must be understood that there are costs associated with collecting and distributing it. While providing information to consumers generates significant benefits for both the consumers and the health system as a whole, it is not necessarily inexpensive. Recognizing these costs, however, is not an argument for a "bare bones" approach to information disclosure. The failure to provide information also has costs. Well-informed consumers are the bedrock of an efficiently operating market. Without meaningful information, consumers are more likely to make choices that can result in less than optimal outcomes for themselves and there is less incentive for participants to strive for excellence. The challenge is to develop coordinated approaches to information collection and dissemination that will provide consumers the information they need to make decisions without imposing severe burdens on plans and providers.

  Investments in Clinical Information Systems and Workforce Education and Training Will Be Needed. Greater investment in automated information systems will be necessary for health plans and providers to satisfy these information disclosure requirements, especially ones pertaining to product, facility, and provider performance and quality. The Commission is currently assessing barriers or impediments to investment in clinical information systems (e.g., inadequate data collection standards; confidentiality concerns; magnitude of capital investments required) and plans to speak to this issue in its final report. Responding to these increased information demands also has implications for the training and education of the health care workforce. There will be greater demand by health care organizations for individuals with particular technical and analytic skills (e.g., computer programming, engineering, data auditing, and statistics). Ongoing training and continuing education programs for practitioners and other workers whose work involves recording, compiling, or manipulating clinical and administrative data will also be needed to assure the completeness and accuracy of data and adherence to confidentiality safeguards.

References and Selected Reading

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.

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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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