National Committee on Vital & Health Statistics

March 10, 1998

The Honorable Donna E. Shalala
Secretary of Health and Human Services
200 Independence Avenue S.W.
Washington, D.C. 20201

The Honorable Alexis M. Herman
Department of Labor
200 Constitution Avenue, NW
Washington, D.C. 20210

Dear Secretary Shalala and Secretary Herman:

The National Committee on Vital and Health Statistics (NCVHS) has reviewed the Consumer Bill of Rights and Responsibilities (CBORR) published by the President’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry with great interest. We applaud and support its recommendations. The following comments were approved by the Committee with one abstention.

The NCVHS endorses the statement in the CBORR that, “Health coverage is the best consumer protection,” noting that 41 million Americans do not have health coverage (p. 12, para. 2). The Committee notes that 41 million people are not only outside health insurance systems, they are also outside the reach of most data systems. We know little about their health or health care. While statewide hospital discharge databases, for example, will capture hospitalizations of uninsured individuals, we know nothing about where they go or who they see outside of such contacts. In addition, increasingly, private insurers are using their enrollment files to identify “nonusers” (i.e., persons who seek no covered care during specified periods) who might benefit from preventive or other services. The uninsured cannot be tracked to improve their care in such a way.

The CBORR repeatedly stresses the need for “evidence-based” care (p. 13, last para.). We support the concept of evidence-based care but recognize that how one defines the evidence base can be problematic. As the NCVHS has noted during previous discussions, relatively little evidence is actually available to achieve this goal. This clearly needs to be seen as a future goal: e.g., “working toward care based on evidence.” Furthermore, producing acceptable “evidence” under a standard, scientific, medical paradigm, will be more difficult for some types of services than for others.

The classic disease-focused medical paradigm for evidence may not fit many beneficial services. The focus typically is on episodes of illness or care rather than a assessment of outcomes over time. For example, patients report that physical therapy (PT) and occupational therapy (OT) are invaluable to improving or maintaining their physical and role functioning. However, quantitative, outcome measurement tools to assess their value are limited. Similarly, what about services that are necessary simply to maintain a patient’s most basic functions (e.g., supportive services in chronic disease hospitals, facilities with ventilator-dependent patients, nursing homes)? In addition, cultural and linguistic issues are crucial in assessing services that address functional and mental health outcomes. Moreover, evidence of effectiveness is particularly lacking for some populations, such as children and women. The Committee is concerned that some services may be devalued under this “evidence-based” standard.

Chapter 1. Information Disclosure

The NCVHS supports the CBORR’s recommendation that information be available about health plans, providers, and health care facilities (p. 15). The Committee notes that, currently, much of this information cannot be compared across plans because of differences in data sets and measurement methods. The NCVHS strongly support the call for standardized measures (p. 16, second bullet) and for further development of methods (p. 16, third bullet).

The NCVHS notes that standardized measures require standardized data sets for deriving the measures. This ties in with the early goals of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and argues strongly for the later HIPAA focus on electronic medical records. However, some of the information recommended by the CBORR will not be available even in the most extensive clinical information system (e.g., information about worker and consumer satisfaction,” p. 15, third bullet). Obtaining information, especially from consumers, could be complicated and potentially threatening to the very people it intends to serve.

During a recent hearing in Phoenix, Arizona, the Subcommittee on Population-Specific Issues heard testimony from a mother of a son with disabilities, who reported that parents of needy children are often afraid to answer such questions honestly — they worry about losing essential coverage for their child. The NCVHS emphasizes that, whenever consumers are asked to report satisfaction or other information about their health or health care, they must be assured that their responses will not be used to affect their rights, benefits, insurance coverage or privileges.

The NCVHS also emphasizes that information about quality should span settings of care (i.e., not be limited to doctors’ offices, outpatient clinics, hospitals and emergency departments). While the CBORR does not explicitly identify care settings, the text seems most pertinent to acute care or preventive settings — not home care, other community-based care, or long-term care services. Special efforts must focus on developing quality measures for other settings of care, such as home care, nursing home care, rehabilitation services and chronic disease hospitals.

The NCVHS strongly supports efforts to ensure the feasibility and cost-effectiveness of data gathering (p. 23, last para.) and agrees with the CBORR that data have costs, and therefore, data requirements must consider how to obtain useful data at an affordable cost.

Finally, the NCVHS concurs that greater automation will enhance the ability to produce cost-effective information on quality of care (p. 24). The NCVHS further agrees that “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.”

Chapter 4. Participation in Treatment Decisions

This chapter emphasizes the need for cultural competence in involving patients with their health care decisions (p. 39, first bullet). The NCVHS supports this objective and relates it back to Chapter 1’s call for consumer satisfaction measures. The limitations of satisfaction surveys are well known and must be overcome before they can be used successfully as measures of quality. In particular, emphasis should be equally on ascertaining consumers’ reports of their experiences as well as their satisfaction with them, because needed changes require specific information as well as perceptions about reality. All aspects of information about quality should meet a standard of cultural competence. The NCVHS argues strongly for linguistic and cultural competence in gathering and disseminating information on satisfaction and quality, but also recognizes the costs involved. Information about language must be in data sets so health plans can understand the linguistic needs of their enrollees. It is the Committee’s understanding that little information currently is available about language needs — either to match enrollees with appropriate clinicians or to evaluate access of linguistic minorities to care.

Chapter 6. Confidentiality of Health Information

The CBORR encourages “Congress to move forward expeditiously” (p. 55, para. 4) on passage of a comprehensive Federal confidentiality law. The NCVHS is on record in strongly supporting federal confidentiality legislation in its June 1997 Health Privacy and Confidentiality Recommendations to the Department. In that report, the NCVHS recommends “that the Secretary and the Administration assign the highest priority to the development of a strong position on health privacy that provides the highest possible level of protection for the privacy rights of patients. The Committee also unanimously recommends that the 105th Congress enact a health privacy law before it adjourns in the fall of 1998.” The NCVHS continues to offer its support in making this goal a reality.

The NCVHS looks forward to reviewing the Commission’s forthcoming report and recommendations on Quality in the Health Care Industry and will provide comments to you on this report following our June 1998 meeting.


Don E. Detmer, M.D.

John Eisenberg, M.D.
Margaret Hamburg, M.D.