Appendix A
Consumer Bill of Rights and Responsibilities
Table of Contents
Table of Contents
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
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:
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.
To ensure such choice, health plans should provide the following:
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.
To ensure this right:
In order to ensure consumers' right and ability to participate in treatment decisions, health care professionals should:
To facilitate greater communication between patients and providers, health care providers, facilities, and plans should:
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.
In order to ensure this right:
Internal appeals systems should include:
External appeals systems should:
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 organizations3 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.
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.
The work of the Commission was guided by the following principles:
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.
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.
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.
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.
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.
Additional information that should be made available upon request includes:
Additional information that should be made available upon request includes:
Consumers should receive upon request the following information on health professionals:
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.
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.
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.
Statement of the Right 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:
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.
Thus, a health care marketplace that promotes satisfied consumers, continuity of care, and continuous improvements in quality requires that an array of choices be available to consumers. Without consumers' ability to have and exercise choice, greater activities may need to be undertaken by group purchasers and regulators to ensure that the health care marketplace responds appropriately to consumers' health care needs.
At the same time, there has been a steady migration from traditional indemnity plans to various managed care products in both the public and private markets. Between 1991 and 1995, the percentage of American workers enrolled in indemnity plans decreased from 59 percent to 35 percent (EBRI, 1997). In 1997, more than 5 million Medicare beneficiaries were enrolled in 336 managed care plans, an increase of more than 100 percent since 1993. Under Medicaid, 13 million, or 35 percent, of all beneficiaries have been enrolled in managed care plans, an increase of more than 170 percent since 1993. The Balanced Budget Act of 1997 will increase those trends by expanding the types of products available to beneficiaries of those two public programs.
Although there is greater choice of health insurance products available in most markets, it is important to note that this choice often is exercised at the level of the group purchaser instead of by individual consumers. Between 1988 and 1997, health plan offerings by moderate- and large-sized employers declined (Gabel, 1997). Those offering three or more plans declined from 35 percent to 32 percent, while those offering only one plan climbed from 41 percent to 44 percent over that period. Notably, the percentage of employees in firms with 200 or more workers who were offered coverage of PPOs and POS plans increased from 12 percent in 1988 to 58 percent in 1997 (Gabel, 1997).
There also is evidence of variation in consumer preferences for various product characteristics. In the Kaiser-AHCPR survey (1996), 70 percent of survey respondents would prefer a high-cost product with a wide range of benefits over a low-cost product with a more limited range of benefits (26 percent). Respondents were more divided over other health product decisions. Fifty-three percent said they would pay more for unrestricted choice of physicians, while 43 percent would opt for a lower-cost product that limited choice to a list of physicians. Forty-six percent would pay more to have direct access to any specialist, whereas more than half (51 percent) would choose a lower-cost plan that requires a visit to the family physician for a referral (Robinson and Brodie, 1997).
The Commission is troubled by the limited choice of insurance products made available to many consumers through their employer group purchasers. Some of the reduction in choice of plan and product has resulted from conscious decisions by employers to select high-quality products at the best price in the market. In other instances, employers may be seeking to minimize administrative costs associated with multiple offerings. Affording consumers greater choice of plans would allow consumers to select the product that best meets their individual preferences and would encourage health plans to be responsive to consumers' expressed needs. However, the Commission recognizes that, for many consumers, the availability of one plan is better than no plan at all.
The Commission was unable to achieve consensus on creating a "right" to a consumer choice of health plan or product but it is determined to find ways to encourage and assist employers and other group purchasers in providing consumers with a meaningful choice of health plans and products. Consumer choice of health plans is important and should be provided whenever possible and in a way that is affordable both to employers and consumers. In its final report, the Commission will address policy options to provide greater choice of health plans and products, including encouraging the development of purchasing coalitions and alliances to assist small employers who encounter the greatest difficulty in offering multiple options.
It also is clear that consumers value some degree of choice of physicians. The 1997 Kaiser/Commonwealth National Health Insurance Survey found that respondents with a choice of physicians registered the highest level of satisfaction with their plans (Davis and Schoen, 1997). A Kaiser-AHCPR survey of consumers identified four reasons why consumers prefer a greater choice of physicians and other health care professionals:
The most frequently cited reasons speak to consumers' desire to use choice of physicians as a way to obtain quality care. The third is directed toward maintaining relationships with physicians with whom consumers have an existing relationship. In other words, 63 percent of consumers surveyed wanted a choice of physicians so that they can develop and maintain a relationship with a physician they trust to provide them high-quality care.
Therefore, it is important for all health plans and products to maintain an adequate network of physicians and other health care providers, to provide for continuity of care when consumers change plans, and to allow consumers with special health care needs to have adequate choice of physicians and other health care providers. This can lead to higher consumer satisfaction with providers and their health plans without undermining the efforts of provider groups and health plans to develop organized delivery systems.
The Commission's recommendations seek to build on these trends toward providing greater choice by taking several steps to ensure (1) network adequacy; (2) greater access for women to qualified specialists for women's health services; (3) ease of access to specialists for consumers with complex and serious conditions; and (4) greater continuity of care for consumers who enroll in new health plans or see their provider dropped from a plan for other than cause.
Consumers will need to exercise their right to choice by using good judgment and providing direct feedback to plans about their level of satisfaction with the network provided for them.
Quality Oversight Organizations will need to incorporate network adequacy standards into their review activities.
Cowan, CA, Braden, BR, McDonnell, PA, et al. "Business, Households and Government: Health Spending, 1994." Health Care Finance Rev; Summer 1996; 17(4):157-178.
Davis K, Collins KS, Schoen C, et al. "Choice Matters: Enrollees' Views of Their Health Plans." Health Affairs; Summer 1995; 99-112.
Davis K, Schoen C. testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry; June 25, 1997.
Employee Benefits Research Institute. EBRI Databook on Employee Benefits, Washington DC, 1997.
Gabel JR (KPMG Peat Marwick LLP). testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry; June 23, 1997.
Kaiser Family Foundation and the Agency for Health Care Policy and Research (AHCPR). Americans as Health Care Consumers: The Role of Quality Information. Princeton Survey Research Associates; October 1996.
KPMG Peat Marwick, Health Insurance Association of America. Sourcebook of Health Insurance Data. Washington, DC; 1996.
O'Malley AS, Mandelblatt J, Gold K, Cagney KA, Kerner J. "Continuity of Care and the Use of Breast and Cervical Cancer Screening Services in a Multiethnic Community." Arch Intern Med 1997; 157(13):1462-70.
National Association of Insurance Commissioners. Managed Care Plan Network Adequacy Model Act. Model Regulation Service; October 1996.
Robinson S, Brodie M. "Understanding the Quality Challenge for Health Consumers: The Kaiser/AHCPR Survey." Journal on Quality Improvement, May 1997; 23(5):239-244.
Statement of the Right 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:
Patients go to the emergency department with nonurgent problems for various reasons. Economic and geographic barriers to other forms of care, the lack of a regular provider, and other factors can and do prompt patients to turn to the emergency department for primary and other nonurgent care. Apart from lack of health insurance coverage, nonfinancial barriers to primary care encourage patients to seek evaluation and treatment in the ED. These include problems with work schedules, access to transportation, and concerns about personal safety (Rask, Williams, Parker, et al., 1994). Physician offices and primary care clinics often have limited hours of operation, while EDs are open 24 hours a day. Medicaid beneficiaries, who have a history of limited access to regular providers, have particularly strong relationships with EDs as the provider of first and last resort. Nonurgent visits to the ED can be costly, contribute to overcrowded waiting rooms, divert resources away from other hospital-based care, and compromise the coordination and continuity of care.
But drawing the line between urgent and nonurgent use of the ED is not an easy decision for providers, health plans, and consumers. Criteria -- both prospective and retrospective -- for appropriate ED use are in many ways inadequate. By one criterion, a patient's ED visit might be deemed appropriate, and by another, not so (Lowe and Bindman, 1997). Health care professionals do not agree among themselves about the need for urgent care among emergency department patients (Gill, Reese, and Diamond, 1996). In a survey of 56 hospital EDs, 5.5 percent of patients initially classified by triage nurses as nonurgent were later admitted to the hospital from the ED (Young, Wagner, Kellerman, et al., 1996). Studies estimate that those presenting with nonurgent problems to the ED range from 6.3 percent (Cunningham, Clancy, and Cohen, et al., 1995) to 54.2 percent (Stussman, 1997) of ED visits.
To better manage care and costs in the ED setting, indemnity and managed care plans use a range of tools that includes requirements for prior authorization and imposition of higher cost-sharing for use of out-of-network emergency departments. A 1989 survey of HMO medical directors found coverage policies for ED use across the HMO industry to be fairly uniform (Kerr, 1989). Unless the condition is life-threatening, patients must obtain prior authorization before seeking emergency care services in 80 percent of the responding HMOs, and 38 percent limited their coverage to the EDs of selected network hospitals. A study undertaken by the Center for Health Policy Studies shows that private indemnity insurers have adopted many of these same practices in their fee-for-service arrangements (PPRC, 1996).
A growing set of State and Federal laws and regulations clarify and protect consumers' access to appropriate emergency services. The Emergency Medical Treatment and Labor Act (EMTALA) requires all Medicare participating hospitals to evaluate whether a patient has an emergency medical condition and, if so, to stabilize the patient. The Balanced Budget Act of 1997 requires health plans participating in Medicare or Medicaid to reimburse for emergency services using a "prudent layperson" standard. Numerous States also have adopted this standard for access to emergency services. The Commission's recommendation seeks to create uniformity in all States.
Health plans. Health plans need to expand consumer education efforts and, when it is within their control, expand hours and location of primary care facilities to facilitate access to such services outside of emergency departments. Plans need to ensure that their coverage and payment policies are consistent with the "prudent layperson" standard.
Consumers. Consumers need to become more familiar with the location and hours of nonemergency care settings and strive to make greater use of such facilities when appropriate. Consumers should communicate with their providers and plans to understand any restrictions on their access to emergency services.
Gill JM, Reese CL, Diamond JJ. "Disagreement among Health Care Professionals about the Urgent Care Needs of Emergency Department Patients." Ann Emerg Med 1996; 28(5):474-479.
Kerr HD. "Access to Emergency Departments: A Survey of HMO Policies." Ann Emerg Med 1989; 18(3):274-277.
Lowe RA, Bindman AB. "Judging Who Needs Emergency Department Care: A Prerequisite for Policy-Making." Am J Emerg Med 1997; 15(2):133-136.
Physician Payment Review Commission. Managing Medicare's Fee-for-Service Program. 1996 Annual Report to Congress. Washington, DC: PPRC; 1996; 196-199.
Rask KJ, Williams MV, Parker RM, et al. "Obstacles Predicting Lack of a Regular Provider and Delays in Seeking Care for Patients at an Urban Public Hospital." JAMA 1994; 271:1931-1933.
Stussman BJ. National Hospital Ambulatory Medical Care Survey: 1995 Emergency Department Survey. Advance Data from Vital and Health Statistics (no. 285). Hyattsville, MD: National Center for Health Statistics; 1997.
Young GP, Wagner MB, Kellermann AL, et al. "Ambulatory Visits to Hospital Emergency Departments: Patterns and Reasons for Use." JAMA 1996; 276:460-465.
Statement of the Right 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:
To facilitate greater communication between patients and providers, health care providers, facilities, and plans should:
The benefits of patient participation go beyond just the anticipated therapeutic effect of the intervention (Czajkowski and Chesney, 1990). For example, the Coronary Drug Project Research Group (1980), which studied the efficacy and safety of several lipid-lowering drugs, found that even among patients who only took placebos, good adherers had a much lower 5-year mortality rate (15 percent) than did poor adherers (24.6 percent).
Patient participation in treatment decision making also leads to improved satisfaction with care and better quality of life. For example, in a study of patients with early breast cancer, it was found that those who believed they were more responsible for treatment decisions and had more choice of treatment reported higher quality of life than those who perceived themselves as less in control of the treatment decisions (Street and Voigt, 1997).
To participate in decisionmaking about their care, consumers must have complete information about treatment options -- including the alternative of no intervention -- as well as the risks, benefits, and consequences of such options. Yet evidence suggests that clinical practice often falls short of these expectations. A 1988 study of hospitalized patients found that physicians discussed test or treatment rationale in only 43 percent of cases and alternatives in 12 percent of cases (Wu and Pearlman, 1988). Physicians shared with patients information about benefits in 34 percent of cases and risks in 14 percent of cases.
The continued development of communications technologies to help consumers more fully understand their treatment options and to evaluate the potential risks and benefits of treatments should be encouraged, for example, the use of videos to help men with prostate cancer evaluate the risks and benefits of surgery versus a "watchful waiting" strategy (Wennberg, 1995) and to help men with benign prostatic hypertrophy sort out options for treatment (Wagner et al., 1995).
Increasingly, effective communication between providers and patients demands some degree of cultural competence. By the year 2000, nearly one-quarter of the U.S. population will be members of racial or ethnic "minority" groups; this will grow to 47.5 percent by the middle of the next century. Cultural competence refers to the "demonstrated awareness and integration of three population-specific issues: health-related beliefs and cultural values, disease incidence and prevalence, and treatment efficacy" (Lavizzo-Mourey and Mackenzie, 1996). Effective communication for people with communication disabilities may require health care providers to provide auxiliary aids and services and remove certain communication barriers.
It also is imperative that providers be aware of and comply with their patients' decisions with respect to advance directives. Once a patient makes a decision, the health care team should respect this treatment choice. Yet there is clear evidence that this is not happening in far too many instances. Teno et al. (1995) studied 4,301 patients hospitalized in 6 hospitals and found that physicians often were unaware of their patients' wishes. In 47 percent of cases, physicians reported that they did not know of their patients' expressed desire for a "do not resuscitate" order. In another study focusing on nursing home residents transferred to hospitals, Davis, Southerland, Garrett, et al. (1991) found that medical treatment was consistent with advance directives in 75 percent of the 96 cases studied.
Much attention has focused in recent years on the potential effects of providers' financial incentives on treatment. Methods of compensating physicians can be a powerful mechanism to change provider practice, either to improve the quality of care provided to consumers or to reduce the costs of that care. But poorly designed compensation arrangements also can result in inappropriate use (including both overuse and underuse) and barriers to care.
All methods of compensating physicians and other health care providers create some form of incentive for behavior. Various approaches are used to offset the potential adverse effects of compensation arrangements. For example, fee-for-service systems may use utilization review mechanisms to temper incentives toward overutilization of health care services. Capitation systems may incorporate measures of quality and consumer satisfaction to minimize incentives toward overutilization. Similarly, salaried arrangements may use bonuses to encourage higher provider productivity and exemplary performance.
In 1996, the Health Care Financing Administration promulgated rules concerning the use of certain types of financial arrangements on behalf of health plans serving Medicare or Medicaid beneficiaries. These rules stipulate that compensation arrangements "may not include any direct or indirect payments to physicians or groups as an inducement to limit or reduce necessary services furnished to an individual enrollee who is covered under the managed care organization's contract." These regulations also require disclosure of information about arrangements that transfer substantial financial risk to the health care provider. If the compensation methods used places the physician or physician group at substantial financial risk, then the health plan must survey enrollees about access and satisfaction with the quality of services, and institute adequate and appropriate stop-loss protections.
In addition to financial incentives, contract rules that restrict providers' ability to advise patients about medically necessary treatment options have been the subject of much concern. Health care providers must be able to advocate for their patients without constraint or fear of reprisal. A report by the General Accounting Office (GAO, 1997) reported: "Of the 529 HMOs in our study, none used contract clauses that specifically restricted physicians from discussing all appropriate medical options with their patients. Two-thirds of responding plans and 60 percent of the contracts submitted had a nondisparagement, nonsolicitation, or confidentiality clause that some physicians might interpret as limiting communication about all treatment options. However, contracts with such business clauses often contained anti-gag language stating that the physician should not misconstrue the contract of a specific provision as restricting medical advice to patients or that the physician should foster open communication." As of mid-1997, 25 States had prohibited the use of such clauses in managed care contracts with physicians and legislation was pending in 23 other States (Health Policy Tracking Service, 1997). In December 1996, HCFA banned the use of gag rules under the Medicare program and in February 1997, HCFA took similar action regarding health plans' participating in Medicaid.
Health care providers also have the central role in ensuring the patient's participation in treatment decisions, including compliance with informed consent. They will need to improve their skills in providing information about the medical and scientific evidence underlying different treatment options to patients and their families; strive to overcome cultural and language and communication barriers; and keep abreast of the latest and best available treatment options. At the same time, they will need to do a better job of listening to their patients and following their decisions, including the decision to forgo treatment or certain types of treatment. Health care providers should assume this responsibility well before a patient reaches a hospital door. To hold the trust of patients, providers will need to disclose financial incentives that may introduce bias into treatment decisionmaking and to avoid such incentives when the balance is tipped against the patient. To be above any potential bias, providers must avoid self-referral arrangements that can cloud their professional judgment. And, finally, health care providers are and should be the most effective advocates for their patients' rights.
Health care facilities and plans must create and maintain an environment supportive of consumer participation in treatment decisions. In the office practice, this means ensuring adequate visit time for patients and providing support for shared decisionmaking programs when questions about care linger, arise after hours, or require further explanation. Health plans can play a significant role in educating patients on how to get the most out of their visit with a health care provider. They can arrange for translator services for patients and continuing education courses for providers to assure cultural and language competency. By statute, health plans and hospitals have obligations to educate the public about the use of advance directives. As importantly, once advance directives are signed, these documents must become part of the patient's health record and must move with the patient from care setting to care setting. In establishing provider compensation arrangements, health plans and facilities must be vigilant in guarding against the unintended, negative consequences of financial incentives by implementing programs to monitor quality of care and patient satisfaction. The nature of these incentives ought to be disclosed to patients and providers. In contracting with health care providers, plans and facilities should not restrict the provider's ability to discuss treatment options with the patient and not take reprisal upon the health care provider who serves as patient advocate.
Czajkowski SM, Chesney MA. "Adherence and the Placebo Effect." in Schumacher, SK, Schron EB, Ockene JK, et al., editors. The Handbook of Health Behavior Change. New York: Springer Publishing Company; 1990.
Davis M, Southerland LI, Garrett JM, et al. "A Prospective Study of Advance Directives for Life-Sustaining Care." N Engl J Med 1991; 324:882-8.
General Accounting Office. Report to Congressional Requesters. Managed Care: Explicit Gag Clauses Not Found in HMO Contracts, But Physician Concerns Remain. August 1997.
Health Policy Tracking Service. Issue Brief: Bans on Gag Clauses. April 1997.
Lavizzo-Mourey R, Mackenzie ER. "Cultural Competence: Essential Measurements of Quality for Managed Care Organizations." Ann Intern Med 1996; 124(10):919-921.
Street RL, Voigt B. "Patient Participation in Deciding Breast Cancer Treatment and Subsequent Quality of Life." Med Decis Making 1997; 17:298-306.
Teno JM, Hakim RB, Knaus WA, et al. "Preferences for Cardiopulmonary Resuscitation; Physician-Patient Agreement and Hospital Resource Use. The SUPPORT Investigators." J Gen Intern Med 1995; 10(4):179-86.
Wagner EH, Barrett P, Barry MJ, Barlow W, Fowler FJ. "The Effect of a Shared Decision Making Program on Rates of Surgery for Benign Prostatic Hyperplasia; Pilot Results. Med Care 1995; 33:765-770.
Wennberg J (Producer). Treatment Choices for Prostate Cancer [Film]. Hanover, NH: Foundation for Informed Decision Making, 1995.
Wu WC, Pearlman RA. "Consent in Medical Decision-Making: The Role of Communication." J Gen Intern Med 1988; 3:9-14.
Statement of the Right 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.
Respect has been defined as recognizing a "person's capacities and perspectives, including his or her right to hold certain views, to make certain choices, and to take certain actions based on personal values and beliefs" (Faden and Beauchamp, 1986). Manifestations of disrespect in the health care setting described by consumers in recent research (Levinson et al., 1997) and interviews include: poor communication with their doctor, feeling rushed or ignored, lack of dignity during examinations, experiencing extensive waiting room delays, receiving inadequate explanations or advice, having inadequate time with the doctor during routine visits, feeling that complaints are not taken seriously by providers, and feeling that providers are more concerned with holding down the cost of medical care than with giving the best medical care. Conversely, consumers defined respectful treatment as that which takes into consideration the values, preferences, and expressed needs of the patient. In addition, consumers wanted providers to communicate well, to be respectful of the patient's time, and to give emotional support to alleviate the patient's fear and anxiety.
In order to extend consumers the respect they deserve, members of the health care industry should strive to:
A key element of respectful and fair treatment is protection against discrimination in the delivery of health care services, and in marketing and enrollment, for those eligible for coverage under the terms and conditions of a health plan or program, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
Race, ethnicity, national origin, and religion. Discrimination on the basis of race, ethnicity, national origin, or religion in the provision of health care has also been well documented. There is evidence of disparities in the quality of care, access to health care (because of language or geographic barriers), and the amount of care given to minorities as compared with others (Kahn et al., 1994; Giles et al., 1995; Rosenbaum et al., 1997; Smollar, 1988). In the case of facilities or individuals who accept Federal funds, Federal civil rights statutes prohibit the denial of services; the provision of a different service or services in a different manner from those provided to others; and the segregation of or separate treatment of individuals in any matter related to receiving services (Office of Civil Rights, 1990).
Age. Discrimination against consumers based on their age also occurs in the health care industry including: less aggressive treatment for elderly women with breast cancer and lower than average referral rates for mental health services in older people (Nattinger et al., 1992; Osteen et al., 1992; Ayanian et al., 1993). The Age Discrimination Act of 1972 also prohibits discrimination based on age by any institution or health care provider who accepts Federal funds.
Sexual orientation. Gay and lesbian patients have received reduced care or have been denied care because of their sexual orientation (AAPHR, 1994). Discrimination against gay/lesbian consumers has sometimes been compounded by fears of HIV.
Disability status. There is an extensive history of discrimination against people with disabilities and chronic illnesses that has led to action by Federal and State Government. The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination against individuals with real or perceived disabilities in employment, public services, public accommodations, communications, and employer-provided health insurance. The Health Insurance Portability and Accountability Act of 1996 prohibits the exclusion of an individual from the group insurance market for more than 12 months based on a preexisting medical condition. The Mental Health Parity Act of 1996 prohibits differential lifetime or annual caps on coverage for physical and mental illnesses in certain situations.
Despite passage of these landmark laws, not all Americans living with disabilities or adverse medical conditions have access to health coverage at a cost they believe is fair or affordable. This is particularly true for consumers attempting to purchase coverage in the individual insurance market. Research into further refinements in the insurance market is needed to assist these individuals. The Commission strongly urges insurers, public and private purchasers, State and Federal Governments, and others to explore all policy options to make health coverage available and affordable to Americans who wish to obtain it, especially those who are living with mental or physical disabilities and chronic illnesses.
Finally, despite recent improvements, many health care facilities remain inaccessible to individuals with disabilities (Savage, 1997). The Commission believes that elimination of physical and communication barriers in health care facilities should be a higher priority for government agencies charged with enforcing the ADA.
Source of payment. The health care system currently is undergoing an historic transformation in which low-income Medicaid beneficiaries are being enrolled into private health plans. While this is a positive development in terms of access for traditionally vulnerable populations to high-quality care, it is almost certain to create additional tensions that could be manifest in discrimination. Providers who agree to accept Medicaid beneficiaries must provide equal access, care, and waiting times to those patients. It will be vitally important for State and Federal agencies to closely monitor the provision of care to Medicaid beneficiaries as they move into new health plans.
Health care professionals and other health workers have the most direct contact with patients and, therefore, have the greatest responsibility to treat health care consumers with respect and to ensure that they do not discriminate. Providers have a responsibility to listen to patients and take their concerns and complaints seriously. Providers also have a responsibility to monitor their treatment of patients to assure they are treated with respect and nondiscrimination and to correct problems when they occur.
Health care facilities that renovate existing facilities or construct new ones must meet a high standard of access in order to avoid discriminating against persons with disabilities. While there is no ADA requirement to "retrofit" existing facilities to make them accessible, there is a responsibility to remove "readily achievable" physical and communication barriers. All health care providers should assess the level of access in their medical facilities and take steps to provide effective communication and unimpeded physical access to the maximum extent possible.
Health plans will need to examine the standards and incentives that exist within their systems that may inadvertently discourage providers from attending to the interpersonal aspects of health care quality that can be manifest as disrespect. Consumers enrolled in health plans with defined networks of providers should have access to their plans' participating providers, without regard to the source of their coverage (e.g., Medicare, Medicaid, employer-sponsored plan).
Quality oversight organizations should utilize tools that allow accurate measurement of dimensions of health care quality that reflect consumer concerns about being treated with respect. Public disclosure of these findings, together with measurements of clinical quality of care, cost, benefit, and other salient information can allow consumers to determine the relative importance they place on such information and make their purchasing decisions accordingly.
Health care worker education and training programs need to recognize and act upon the need for improvements in communication skills by providers. Receiving inadequate explanations and advice, having inadequate time to receive answers to questions, and failure to attend to the need for emotional support can have adverse consequences on health outcomes (Bame et al., 1993; Patterson et al., 1991; Juncos, 1990). Similarly, education and training programs need to develop and implement course content addressing the significance of cultural attitudes on the effectiveness of health care and the importance of being sensitive to the varying needs of people with disabilities, including those with sensory or cognitive disabilities, who often require auxiliary aids or extra time and plain-language explanation to ensure effective communication. Health plans, hospitals, and other large institutional providers are encouraged to have on-site interpreters for any language population that exceeds a specified standard (e.g., 5 percent or more) and telephone interpreter services for other language minorities. Written material provided to patients should also be translated for the larger linguistic groups.
American Associations of Physicians for Human Rights. Anti-Gay Discrimination in Medicine: Results of a National Survey of Lesbian, Gay and Bisexual Physicians. San Francisco; 1994.
Ayanian JZ, Kohler BA, Abe T, et al. "The Relation Between Health Insurance Coverage and Clinical Outcomes among Women with Breast Cancer." N Eng J Med 1992; 326:1102-1107.
Bame S, Petersen N, et al. "Variation in Hemodialysis Patient Compliance According to Demographic Characteristics." Soc Sci Med, Oct. 1993; 37(8):1035-1043.
Beery TA. "Diagnosis and Treatment of Cardiac Disease: Gender Bias in the Diagnosis and Treatment of Coronary Artery Disease." Heart & Lung. November 1995; 24(4):427-435.
The Commonwealth Fund. The Commonwealth Fund Survey of Women's Health. New York: July 1993.
Davis K, Collins KS, et al. "Choice Matters: Enrollees' Views of Their Health Plans." Health Affairs, Summer 1995; 9-112.
Edgeman-Levitan S, Cleary PD. "What Information Do Consumers Want and Need? A Synthesis of Research to Date, Plus Interviews with Health Plan Managers and Consumer Advocates." Health Affairs, Winter 1996; 15(4):42-56.
Faden R, Beauchamp T. A History and Theory of Informed Consent. New York: Oxford University Press, 1986; 8-9.
Giles WH, Anda RF, Casper ML, et al. "Race and Sex Differences in Rates of Invasive Cardiac Procedures in US Hospitals." Arch Intern Med 1995; 155.
Horton JA, ed. The Women's Health Data Book: A Profile of Women's Health in the United States. Washington, DC: Elsevier; 1995.
Kahn KL, Pearson ML, et al. "Health Care for Black and Poor Hospitalized Medicare Patients." JAMA 1994; 27(1).
Juncos LI. "Patient Compliance and Angiotensin Converting Enzyme Inhibitors in Hypertension." J Cardiovascular Pharmacol 1990; 15(3):S22-S25.
Levinson W, Roter DL, et al. "Physician-Patient Communication: The Relationship with Malpractice Claims among Primary Care Physicians and Surgeons." JAMA 1997; 277(7):553-559.
Nattinger AB, Gottlieb MS, Veum J, et al. "Geographic Variation in the Use of Breast-Conserving Treatments for Breast Cancer." N Eng J Med 1992; 326:1102-1107.
Office of Civil Rights. Fact Sheet. U.S. Department of Health and Human Services; 1990.
Osteen RT, Steele GD Jr, Menck HR, et al. "Regional Differences in Surgical Management of Breast Cancer." CA Cancer J Clin 1992; 42:39-43.
Patterson R, Greenberger PA, et al. "Potentially Fatal Asthma; the Problem of Noncompliance." Ann Allergy, Aug 1991; 67(2):138-142.
Rosenbaum S, Serrano R, et al. "Civil Rights in a Changing Health Care System," Health Affairs Jan-Feb 1997.
Savage E. U.S. Department of Justice. verbal communication; September 1997.
Smollar D. "Success of Indochinese Students May Vary with Ethnic Factors." Los Angeles Times, Feb 16, 1988.
Tobin JN, et al. Ann Internal Med. 1987;107.
Statement of the Right 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:
At the same time, the quality of the health care system also depends on the regular exchange of information between providers, employers, plans, public health authorities, researchers, and other users. The changing structure of the health care system and rapid advances in information technology and medical and health care research have increased the demand for and supply of health information among traditional users such as the treating physician, and new users, such as large networks of providers, information management companies, quality and utilization review committees, and independently contracted service providers. Concerns have been raised that, under the current system of information exchange, various entities can access individually identifiable information without sufficient security safeguards and consent requirements.
Other activities undertaken to improve quality and efficiency may present new risks to the confidentiality of health information. For example, quality oversight activities by plans, providers, accreditation bodies, and regulatory agencies require detailed information about the treatment and benefit status of individual consumers. The growing role of employers in workforce health issues has also contributed to the confidentiality debate.
Congress has made repeated attempts to enact a comprehensive Federal confidentiality law but has, to date, been unsuccessful. The web of protections at the Federal and State level that has evolved in the absence of a comprehensive law leaves many aspects of health information unevenly protected. Specialized Federal protections already exist through statutes that address substance abuse, Medicaid beneficiaries, public health, research, government records, and those living with disabilities.
Several States have enacted comprehensive laws and an effort is currently under way at the National Association of Insurance Commissioners to draft a Protected Health Information Model Act for States. Other safeguards have evolved outside of the legislative arena. Accreditation bodies have incorporated requirements for confidentiality policies and patient consent (JCAHO 1996; NCQA 1997; URAC 1996) and continue to collaborate on security and confidentiality issues (JCAHO/NCQA Joint Session, 1997).
The Health Insurance Portability and Accountability Act of 1996 (HIPAA) required the Secretary of Health and Human Services to submit to the Congress detailed recommendations on: (1) the rights that an individual who is a subject of individually identifiable information should have; (2) the procedures that should be established for the exercise of such rights; and (3) the uses and disclosures of such information that should be authorized or required (Public Law 104-191). On September 11, Health and Human Services Secretary Donna Shalala presented those proposals to the Congress (Shalala, 1997). Under the terms of HIPAA, if Congress fails to enact Federal confidentiality legislation by August 1999, the Secretary of HHS is required to promulgate regulations setting confidentiality standards.
The Secretary recommends a comprehensive Federal confidentiality law that would apply "floor preemption," meaning that the law would require that all States comply with a minimum set of confidentiality requirements but would not preempt stronger State laws.
Section 262 of HIPAA also requires the Secretary of HHS to adopt standards by February 1998 for electronic transmission of financial and administrative health care transactions (including information about claims, eligibility, payment, and injury), unique health identifiers (for individuals, employers, plans, and providers), and security.
The Commission believes that it is essential to establish a comprehensive confidentiality framework and encourages the Congress to move forward expeditiously.
Law enforcement officers, researchers, and public health agencies should examine their existing policies to ensure that they access individually identifiable information only when absolutely necessary and provide proper safeguards to assure confidentiality.
Consumers should become more aware of the content of their health records and pay particular attention to requests by providers, plans, employers, or others to gain access to those records.
Joint Commission on Accreditation of Healthcare Organizations, Comprehensive Accreditation Manual for Health Care Networks; 1996.
Joint Commission on Accreditation of Healthcare Organizations and National Committee for Quality Assurance. Joint Session on Security and Confidentiality of Patient Medical Information. Washington, DC; 1997.
Lowrance W. Privacy and Health Research: A Report to the U.S. Secretary of Health and Human Services; May 1997.
National Association of Insurance Commissioners. "Insurance Information and Privacy Protection Model Act" (October 1992); "Quality Assessment and Improvement Model Act" (July 1996); "Utilization Review Model Act" (October 1996).
National Committee for Quality Assurance (NCQA). "Draft Standards for Accreditation;" 1997.
Public Law No. 104-191, "The Health Insurance Portability and Accountability Act of 1996."
Pyles JC, on behalf of the National Coalition for Patient Rights. "The Right to Medical Privacy: An Indispensable Element of Quality Health Care." Washington, DC; 1997.
Shalala, Donna E. Secretary of Health and Human Services. "Confidentiality of Individually Identifiable Health Information: Recommendations Pursuant to Section 264 of the Health Insurance Portability and Accountability Act of 1996." Submitted to The Committee on Labor and Human Resources and the Committee on Finance of the Senate, and The Committee on Commerce and the Committee on Ways and Means of the House of Representatives. September 11, 1997.
URAC National Network Accreditation Standards (April 1996).
Statement of the Right 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:
External appeals systems should:
Fair and efficient procedures for resolving consumer complaints about their health care serve many purposes. First and foremost, enhanced internal and external review processes will assist consumers in obtaining access to appropriate services in a timely fashion, thus maximizing the likelihood of positive health outcomes. Second, they can be used to bridge communication gaps between consumers and their health plans and providers, and to provide useful information to all parties regarding effective treatment and consumer needs. Third, the opportunity for consumers to be heard by people whose decisions significantly touch their lives evidences respect for the dignity of consumers as individuals and engenders their respect for the integrity of the institutions that serve them.
Properly structured complaint resolution processes should promote the resolution of consumer concerns as well as support and enhance the overall goal of improving the quality of health care. Internal and external complaint and appeal processes should be:
Internal and external complaint and appeal processes should not interfere with communication between consumers and their health care providers. For example, in instances where consumers and their providers agree that a service should be reduced or terminated, no written notification of such decisions is needed. Additionally, health care providers who participate in the complaint and appeal processes on behalf of patients should be free from discrimination or retaliation. Likewise, consumers who file a complaint against a provider or plan should be free from discrimination or retaliation.
For the purposes of this chapter, the following definitions are used for the terms "complaints" and "appeals":
Appeal. An "appeal" is a consumer's request for a health plan, facility, or provider or other body to change an initial decision. An appeal process is a procedure for reconsideration of a specific determination made by a health provider, facility or plan.
ERISA Plans. All employers offering health benefits to their employees through managed care organizations or traditional indemnity insurers must comply with requirements of the Employee Retirement Income Security Act. ERISA requires private employer-provided health benefit plans to disclose certain information to plan participants, to report information to the Federal government, and to pay benefits that are promised under the plan. ERISA regulations generally require employer health plans to approve or deny claims within 90 days and to approve or deny appeals of claims denials within 60 days. Although ERISA health plans are required to establish and disclose complaint and appeals procedures to participants, and to notify participants of claims denials, the plans are not required to provide a particular complaint procedure (Butler and Polzer, 1996). An internal reconsideration of denied claims is stipulated but appeals may be decided by the same plan administrators that initially denied the claim. Determinations must be in writing and state specific reasons for the decision.
Medicare. Under the Medicare fee-for-service system, fiscal intermediaries and carriers must provide a two-step internal review and notification of their final decision before a beneficiary is entitled to seek reconsideration from the Social Security Administration's payment division and the Health Care Financing Administration (Kinney, 1996). Medicare provides a graded appeal process that includes a hearing before an administrative law judge and administrative appeals council review for claims under Part A (hospital coverage) if the amount in controversy is more than $100; and under Part B (physical and outpatient coverage) if the claims are more than $500. Claims under Part A and Part B for more than $1,000 are entitled to judicial review.
HMOs that participate in Medicare are required to provide meaningful internal procedures for resolving complaints about the quality of care, untimely provision of care, or the improper demeanor of health care personnel (Stayn, 1994). HMO decisions to deny coverage for certain treatment, referral outside a plan, or reimbursement for emergency or out-of-area care are subject to an external review and administrative appeal. HCFA has contracted with a private organization, the Center for Health Dispute Resolution, to perform these reconsiderations (Richardson, Phillips, and Conley, 1993). After external review, a Medicare beneficiary enrolled in an HMO who is "dissatisfied by reason of his failure to receive any health service to which he believes he is entitled and at no greater charge than he believes he is required to pay" has a right to Social Security administrative review for controversies more than $100 and judicial review for controversies more than $1,000.
Medicaid. The Federal Medicaid statute requires State agencies to provide beneficiaries with a fair hearing and an administrative appeal when their eligibility or requests for services are denied or not acted upon within reasonable time. These State agency determinations can be challenged in State court under State administrative procedure acts or in Federal court. In addition, HMOs that contract to serve Medicaid beneficiaries must establish an internal complaint procedure that will resolve disputes promptly. These internal procedures are subject to review and approval by the State. Medicaid HMO enrollees have the same rights to administrative appeal as do fee-for-service enrollees and no recommendations are made concerning the changing of such rights.
Federal Employees Health Benefit Program. Federal employees and their dependents receive coverage through private insurance carriers, including more than 300 HMOs. Under the FEHBP complaint resolution process, enrollees may bring disputes concerning benefits or services to the Office of Personnel Management for review after asking the plan to reconsider its initial denial and failing to receive a satisfactory reply. OPM seeks to determine whether the enrollee or family member is entitled to the services or supply under the terms of the contract.
Other Approaches. The federal HMO Act requires that to be a "federally qualified HMO," a plan must provide meaningful procedures for hearing and resolving complaints between subscribers and the plan. The written procedures must be easily understood and provided upon request. HMOs are not required to comply with the Act's requirements but may do so to obtain favored status. Other approaches to complaint resolution exist in the Department of Defense's health programs, including the Civilian Health and Medical Program of the Uniformed Services (CHAMPUS).
Establishing Independent External Appeals Systems. Additional analysis must be done to identify the most effective and efficient methods of establishing the independent external appeals function. Issues to be considered include: mechanisms for financing the external review system; sponsorship of the external review function; design of review processes to assure evidence-based decisionmaking; qualifications of reviewers; consumer cost-sharing responsibilities (e.g., filing fees); and methods of overseeing and holding external appeals entities accountable. It will also be important to establish an ongoing evaluation mechanism to assess the impact of the external appeals process on access to appropriate services, rates of consumer disputes, litigation rates, consumer satisfaction, and costs. The evaluation mechanism should also assess the impact of certain design characteristics on the effectiveness and efficiency of the external appeals process.
American Accreditation Health Care Commission/Utilization Review Accreditation Commission (AAHCC/URAC). National Network Accreditation Standards. Washington, DC; April 1996.
American Association of Health Plans. Health Plans Announce Policies on Appeals Rights and Emergency Care Coverage. Washington, DC; January 1997.
American Bar Association, Commission on Legal Problems of the Elderly, Roundtable on the Resolution of Consumer Disputes in Managed Care. Washington, DC; 1997.
American Hospital Association: State Issues Forum. Designing Consumer Protection Standards. Chicago; 1996.
American Psychiatric Association. Principles for the Provision of Mental Health and Substance Abuse Treatment Service: A Bill of Rights. Washington, DC; 1997.
Atkins G, Bass L and K. ERISA Preemption: The Key to Market Innovation in Health Care. New York: Corporate Health Care Coalition; 1995.
Butler P, Polzer K. Private Sector Health Coverage: Variation in Consumer Protections under ERISA and State Law. Washington, DC: National Health Policy Forum, George Washington University; June 1996.
Citizen Action. Campaign for Health Security Managed Care Principles. Washington, DC; January 1997.
Committee on Choice and Managed Care. Assuring Public Accountability and Information, Improving the Medicare Market: Adding Choice and Protections. Washington, DC: Institute of Medicine; 1996.
Dame L, Wolfe SM. Serious Problems for Older Americans in Health Maintenance Organizations. Public Citizen's Health Research Group; May 1995.
Families USA. HMO Consumers at Risk: States to the Rescue. Washington, DC; 1996. Update March 1997.
Joint Commission on Accreditation of Healthcare Organizations, 1996. Accreditation Manual for Hospitals. Chicago; 1996.
Kinney ED. "Resolving Grievances in a Managed Care Environment." Health Matrix 1996 winter; 6:147-165.
Kinney ED. "Protecting Consumers and Providers under Health Reform: An Overview of the Major Administrative Law Issues." Health Matrix 1995; 5:83-138.
Medicare Rights Center. Medicare Appeals and Grievances: Strategies for System Simplification and Informal Consumer Decisionmaking. New York; 1996.
National Association of Insurance Commissioners (NAIC). Health Carriers Grievance Procedure Model Act. October 1996.
National Committee on Quality Assurance (NCQA). "Standards for Members' Rights and Responsibilities." Surveyor Guidelines; April 1, 1997.
Physician Payment Review Commission. Annual Report to Congress 1997. Washington, DC; 1997.
Public Policy and Information Fund of New York. The Managed Care Consumers' Bill of Rights. New York; October 1995.
Richardson DA, Phillips J, Conley D Jr. A Study of Coverage Denial Disputes between Medicare Beneficiaries and HMOs. Pittsford (NY): Center for Health Dispute Resolution, Network Design Group, Inc.; September 1993.
Rodwin MA. "Managed Care and Consumer Protection: What are the Issues?" Seton Hall Law Review Winter 1996; 26:1007-1054.
Stayn SJ. "Securing Access to Care in Health Maintenance Organizations: Toward a Uniform Model of Grievance and Appeals Procedures." Columbia Law Review June 1994; 94:1674-1720.
Statement of 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:
The Commission, however, does not intend to create a link between an individual's conduct in meeting his or her responsibilities and the obligations of plans and providers to provide covered services.
Increased patient responsibility can improve consumers' sense of self-worth. For example, increased responsibility among individuals living with disabilities has resulted in increased independence for that population (Rodwin, 1994; National Health Council, 1995). In fact, this is the principle behind the independent living movement, where people with disabilities live in their homes with personal assistant services rather than in institutions. Individuals report that increased responsibility for their health has led to improved self-esteem and a greater sense of empowerment.
Promoting consumer responsibility is an essential component of the effort toward involving consumers directly in decisionmaking about their health and medical care. Consumers often perceive that the medical professionals who care for them are acting in a condescending or paternalistic manner. They resent being put in a position of dependence and being treated as if they are infantile and object to the presumption that they are incapable of making choices themselves (Rodwin, 1994).
While the Commission believes that consumers must assume certain responsibilities, it also recognizes that reasonable accommodations must be made for numerous consumers with disabilities. For example, some individuals with physical and mental disabilities require assistance with self care; for some individuals with mental disabilities, noncompliance with treatment regimes is a manifestation of their disability; and some individuals with mental and physical disabilities are unable -- due to their disability -- to clearly communicate their wants and needs and, therefore, rely on the assistance of a designated representative. In each case, the health care system must recognize these issues and accommodate these needs. The Commission also recognizes that there are many other factors, such as occupational hazards, language, and income status, that may pose significant barriers to consumers meeting these responsibilities.
Consumers who are able should take the opportunity to educate themselves with respect to the specifics of their benefit coverage and to learn how to access the health care and services available to them as a result of that coverage. This includes:
Consumer responsibility is particularly relevant to the broad right to information established in this Consumer Bill of Rights and Responsibilities (see Chapter One). The Right to Information requires the disclosure of information to consumers either directly or upon request on such things as benefits, cost-sharing, complaints and appeals processes, licensure, accreditation, and performance measures. The Right to Information will improve health outcomes only to the extent that consumers have a choice of health plans and use that information in exercising the choice.
Although there is significant value in promoting the consumers' participation in their own health care by increasing their level of responsibility, it is important to set limits on the amount of responsibility expected. The patient's responsibility to comply with medical advice is limited by the principle of informed consent (Benjamin, 1985). The patient retains the right to choose whether to follow medical advice or not, as long as he or she is willing to accept the health outcome consequences that may result from noncompliance, and the noncompliance does not adversely affect the public (Brock and Wartman, 1994).
Consumers do not have a duty to be subjected to a treatment regime they have good reason to avoid -- for instance, one whose negative side effects outweigh its benefits (Mayer, 1992), or when excessive medication in an institutional setting is used to "control" residents. Most consumer responsibilities do not extend to those who are incompetent to make decisions, including infants, those who are judged to be mentally incompetent, and comatose patients (Emson, 1995; Mayer, 1992; National Health Council, 1995).
In addition, certain high-risk behaviors (smoking, use of smokeless tobacco, illegal drug use) are addictive and cannot be considered fully under the volitional control of the individual consumer. Caution must be used to avoid "blaming the victim." For example, Bayer (1996) notes that during the history of the AIDS epidemic, "the emphasis on personal responsibility was often associated with condemnation of those whose sexual or drug-using behavior had exposed them to HIV, as well as with calls for invasion of privacy and deprivations of liberty."
Compliance with agreed-upon treatment protocols is a particularly important consumer responsibility. Noncompliance with the taking of medication has particular implications for the health status of consumers. Noncompliance includes taking too much medication, taking medication not prescribed, not taking medication prescribed, altering the prescribed dosage, or altering the time between doses.
Finally, it is important to recognize that while consumers should seek to assume the responsibilities discussed in this report, many factors influence consumers' acceptance of medical advice. Some are related to the health care system itself and others are related to the patient's individual psychology. Imanaka, Araki, et al. (1993) identified patient dissatisfaction with their health care providers and plans as a primary cause of patient noncompliance. Several studies have identified inadequate provider-consumer communication as a contributing factor (Imanaka, 1993; Ross, 1991; Donovan and Blake, 1992; Sluijs, Kok, et al., 1993). This leads to situations where:
Noncompliant patients also may have underlying psychiatric disorders. Yellowless and Ruffin (1989) found that 40 percent of patients who experience a life-threatening asthma episode have psychiatric disorders. Patients often are trying to balance the requirements of their prescribed medical regimen with other aspects of their life (Donovan and Blake, 1992). Finally, some patients choose not to comply with medical instructions as a way of expressing their attempts to cope with their disease; as a reaction to the way they have been treated by doctors; or as a way of fighting the system by breaking its "symbolic" rules (Ross, 1991).
Health care providers will need to communicate more clearly with their patients and their patients' families about diagnoses, treatment options, and treatment protocols. They will need to make greater efforts to ensure that those matters are clearly understood and agreed to. They will need to work with their patients to ensure that treatment regimens are possible to follow and that changes in treatment are made when possible to meet patients' needs or demands.
Health plans will need to consider ways to encourage greater communication between consumers and health care professionals, including incentives for such communication and acceptance of treatment regimens.
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