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Discussion Paper

Quality Information for People with Special Health Care Needs (continued)

Supply of Quality Information: Developing Measures and Communicating Results

Currently, few consumers have access to comparative quality information that is specific to either adults or families with children with special health care needs. Comparative information on nine health maintenance organization (HMO) quality measures for people with chronic conditions is available to people whose sponsors require health plans to report the National Commission on Quality Assessment (NCQA) Health Plan Employer Data and Information Set, HEDIS, which represents approximately 25 percent of insured persons and 75 percent of those enrolled in HMOs.* Currently, none of the HEDIS access-to-care or preventive-care measures are specific to people with special health care needs.

* The nine HEDIS measures that cover selected processes and intermediate outcomes-of-care issues for people with diabetes, asthma, depression, hypertension, and heart disease include: blood glucose monitoring, eye exams and lipid profile for people with diabetes; cholesterol screening for people with heart disease; controlling blood pressure in people with hypertension; receipt of beta-blocker medication after a heart attack; receipt of appropriate asthma and antidepressant medication; and follow up after hospitalization for mental health problems.8

Contrary to the situation for adults, there are no generally available quality measures on clinical process, outcomes or experience-of-care for children with special health care needs. However, NCQA recently approved a method to identify and measure basic aspects of care for children with special health care needs. Based on these measures, Bethell et al.25 suggest that quality information for children enrolled in HMOs should be available by 2003, the year in which public reporting is scheduled to begin. Application of this NCQA-approved method in the State of Washington confirmed that there are variations in care between children with and without special health care needs and in quality of care for children with special health care needs across health plans.

Despite the relatively narrow range of available measures, the picture is not entirely bleak for adults with special health care needs who are shopping for an HMO, as long as the available HEDIS information is communicated in a clear and relevant manner. There are several examples of consumer reports that include some or all of the HEDIS adult, chronic-condition measures. However, at best, these reports are assessed as being marginally informative and understandable to consumers. At worst, the reports are either meaningless for any real choices consumers have or are blatantly misleading to consumers.26-37

Reports can be especially misleading when the actual level of performance of a plan is obscured, as can happen when certain scoring and presentation methods are used. For instance, in the recently released Maryland HMO quality report, there are 39 instances in which a health plan is given the highest grade (a filled circle symbol) on HEDIS chronic condition measures. While this presumably indicates to consumers that "good" performance was achieved, only 46 percent of these health plans had performance scores at or above 70—the score at which consumers and experts often report comfort in labeling performance as "good." There are also several instances where a plan is given the worst grade (a blank circle) on these measures when their performance is objectively "good" (above 70), and cases where a plan has a higher score than another plan, but received a lower grade (likely due to sampling error issues).38

In other cases, such as the Connecticut health care report card, plans are unfairly compared without disclosure to the consumer. In Connecticut, the sample sizes for health plans ranged from 25 to 1,962 persons per plan. However, scores were compared without taking into account the variation in confidence in performance scores.26

For children, the soon-to-be-released client health plan quality report for children with special health care needs in Washington State's Medicaid program is the only child-specific example found. While momentum is growing to create provider-level quality reports, there is currently no readily available quality information about health care providers outside of isolated efforts such as Pacificare's medical group quality index or Pennsylvania's Consumer Guide to Coronary Bypass Graft Surgery.36,39

There are good reasons why information on quality is scarce for people with special health care needs. Most notably, the issues are:

  1. People with special health care needs often comprise a small number of individuals in any health plan or provider practice, making statistical comparisons of quality difficult—especially on a condition by condition basis for children.
  2. The scientific evidence base, while growing, is still somewhat limited for most health conditions—especially for children.
  3. For the most part, those persons developing and endorsing quality measures have not historically focused on patient-centered measures, such as those commonly noted as relevant to consumers (e.g., shared decisionmaking, patient education, outcomes).
  4. Targeting measurement to subgroups—such as people with special health care needs—often requires the use of identification methods that are unfeasible, or that some sponsors and agencies are concerned would violate patient confidentiality.

Given the current level of willingness and effort by sponsors to measure and disclose quality information, predominantly in writing, it may be futile to add many new measures to broad-based health plan report cards. An exception to this would be in cases where a condition- or population-specific report is desired (e.g., an asthma-specific report or a child-specific report), or where medical group/provider-level reports are desired. In these cases, considerable new development of measurement is warranted. However, issues of small sample size prevent robust measurement in many of these cases.

Ultimately, given consumers' level of interest, an explosion in on-demand quality information (on-call and online) is more in keeping with the expressed level and scope of information needs for people with special health care needs. However, this is not likely under current measurement and reporting constraints.

In addition to the many technical, strategic and political issues that must be addressed regarding the selection and scoring of quality information and its presentation to all individuals, several specific issues arise as we continue to consider building the supply of quality information for people with special health care needs:

  1. Targeting: Some research (FACCT OPM Report, 199819) suggests that the information on quality that consumers receive should not only respond to their immediate situation and needs (access to care, staying healthy), but also alert them to the care they might expect in the future as their needs change (getting better, living with illness). Should quality information for people with special needs be targeted to special needs populations or to all consumers—many of whom will one day themselves or a family member have a special health care need? Given that there are common quality issues shared by most people with special needs, should future efforts focus on noncondition-specific or condition-by-condition measures?
  2. Scope and Focus: What priority should be given to new measures and to measuring quality beyond the level of the health plan—such as at the medical group or provider level? Realistically, will public-and private-sector sponsors support moving beyond health plan analyses? Are consumers prepared to live with the methods tradeoffs involved in getting information about providers, even though the statistical properties may be less sound (i.e., the use of small samples per provider)? What is the demand from sponsors and consumers to support the development and use of quality measures for institutionalized populations (e.g., long-term care) and those requiring ongoing home care? Is this a priority?
  3. Existing Methods: For HMOs, are existing/anticipated HEDIS measures sufficient to create a solid foundation of consumer quality information? If so, what will motivate sponsors to require reporting this information?
  4. Communication Emphasis: Should communications about quality that is targeted to people with special health care needs emphasize using the information to evaluate and potentially change providers, or on assessing and improving the quality of their current care? If it is the later, it is essential that consumers understand the true level of performance, not just the relative performance,as is depicted in current quality reports? Will sponsors be willing to move to reporting of absolute performance, which depicts both relative and actual levels of performance? Do consumers want this?
  5. New Methods: What are the most promising of the existing and emerging technologies that can support the quality information needs of people with special health care needs? Should/can we move quickly to harness the power and efficiency of on-line data collection, whereby consumers are encouraged to complete surveys (Web-based forms) that can be used to construct a wide range of process, outcome, and experience-of-care quality measures for health plans and providers? What criteria would have to be met to make this a viable strategy for building the supply of information about quality and the delivery of such information to consumers? What strategies are needed to encourage consumers to use and trust such a method?

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Market Characteristics

The most basic feature of a health care market that supports value-based decisionmaking is choice among plans and health care providers. However, it is often people with special health care needs who have the fewest real or perceived choices. People with special health care needs more frequently require care from health care providers who are not large in numbers in any given market (e.g., rheumatologists). In addition, people with special health care needs value continuity of care with providers more strongly than does the general population. Even if choice is available, they may be reluctant to break continuity with their providers (and even their health plans, in many cases) unless dramatic differences in quality are observed and understood. Also, even when the benefits offered are the same across health plans, the specific features of specialized services often needed by people with special health care needs and the convenience and location of providers may override any quality concerns in making choices.

When these observations are compounded by lack of choice among health plans for many consumers, we need to examine what features of a health care market facilitate the nonselection-based uses of quality information.

Questions to consider include:

  1. Contracting: Do the choice constraints and unique needs of people with special health care needs place a greater responsibility on sponsors/purchasers to ensure that the health plans and providers that are offered meet quality standards for these populations? If so, is value-based contracting even more of a primary feature of a health care market that supports quality for people with special needs than it is for the general population?
  2. Payment: Should quality information be used to encourage people to select plans and providers that do a better job—thereby facilitating "adverse selection?" If so, is risk-adjusted payment a primary feature of a health care market that supports quality?
  3. Incentives: Are informed consumers who can only voice their concerns about quality but cannot leave plans or providers sufficient to motivate efforts for these plans or providers to improve?
  4. New Efforts: If a shift in market share is not a compelling motivation, due to insufficient consumer choice, what other incentives are appropriate to ensure that plans and providers respond to consumer concerns and improve quality? When market share is not the primary motivation, are stronger quality-improvement partnerships between sponsors/purchasers and plans/providers more essential as a primary feature of a health care market that supports quality for people with special health care needs?

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The most compelling arguments in favor of consumer quality information will be that it:

  • Helps people select a health plan and providers that better meet their needs.
  • Improves health care quality.
  • Reduces costs.

For this reason, it is natural to make a priority of evaluating the impact of quality information on people with special health care needs. This group has the most complex decisions to make which potentially impact health care provider selection, it is on this group that the bulk of the health care dollar is spent, and it is for these consumers that quality improvement can arguably have the greatest impact on functioning and quality of life.

Case studies and qualitative research findings already confirm many hypotheses and assumptions about quality for people with special health care needs. This is especially true with respect to big-picture research questions such as:

  • Do consumers want information about quality?
  • How do consumers define quality?
  • Is summary information desired?
  • Should counseling on how to use quality information be provided?
  • What are the core content messages consumers should receive?

Yet, longer-term research on the implementation and impact of comprehensive consumer health care quality choice efforts will be most useful to understanding:

  • Whether and how do consumers actually use the information provided?
  • Are consumers misled or confused by the information?
  • What impact has the information had on consumer knowledge, attitudes, and behaviors?
  • What impact has the information had on the health and financial status of consumers?
  • What impact has the information had on how purchasers select health care plan and provider options, and the cost of plan and provider services?
  • What impact has the information had on how providers deliver care, provide services, or price their services?

A primary question here is whether sponsors of quality information efforts will be willing and able to facilitate the completion of needed evaluations given the controversy of designing appropriate control groups and the costs that tend to be involved in such efforts.

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Task 1. Educate and Motivate Consumers to Use Quality Information


1. Work Group on Consumer Health Information. Informing Consumers About Health Care Quality: A Proposed Agenda For Research And Agenda. Draft. 2000.

5. Bethell C. Analytic Report on Making Quality Count Conference. 1999.

6. Chrvala CA, Sharfstein S. Definition of Serious and Complex Medical Conditions. Institute of Medicine, Committee on Serious and Chronic Medical Conditions. National Academy Press. 1999.

7. Centers for Disease Control, Vital and Health Statistics. Current Estimates from the National Health Interview Survey, 1994. Series 10: Survey No. 193. December 1995.

8. McNeil JM. Americans with Disabilities: 1994-95. Current Population Report: Household Economic Studies. P70-61. 1997.

9. Sofaer S, Kenney KA, Mauery DR, et al. Meeting the Challenge of Serving People with Disabilities: A Resource Guide for Assessing the Performance of Managed Care Organizations. 1998.

10. Bethell C, Read D, Newacheck P, et al. Toward a common approach to identifying children with special health care needs. Under development

11. NCQA. State of Managed Care Quality Report. 2000.

12. Bethell C, Lansky D, Hendryx M. Robert Wood Johnson Foundation Priority and Program Area Performance Indicators Summary Report. 2000.

13. Sheehan-Watanabe JB. When What's Ailing You Isn't Your Health: A Report on the Different Problems Experienced by Persons with Specific Health Conditions as They Navigate the Health Care System. Health Rights Hotline. August 2000.

14. FACCT—The Foundation for Accountability. Summary Report: Focus Groups on Consumer Messaging. 2000.

15. Sofaer S, Gruman J, Connaughton S, et al. Developing performance indicators that reflect an expanded view of health: findings from the use of an innovative methodology. Journal on Quality Improvement. 2000. 26;4:189-202.

16. Yankelovich Partners. Omnibus Study. Claremont, CA. 1999.

17. Hibbard JH, Jewett JI. What type of quality information: assessing salience, comprehension, and approaches for communicating quality. Med Care Res Rev 1996:53:28-47.

18. Bethell CD, Lansky D. Reporting Quality Information to Consumers, FACCT—The Foundation for Accountability. Report to the Health Care Financing Administration, 1997.

19. Bethell CD, Read D. Meeting the Health Care Information Needs of Federal Employees and Retirees: An Evaluation of a Framework for Communication. Report to the Office of Personnel Management, Federal Employees Health Benefits Bureau. 1998.

20. Cleary PD, Edgman-Levitan S. Health care quality-incorporating consumer perspectives. JAMA 1997;278:1608-12.

21. Bethell C. Measuring Patient Centered Care Across Consumer Relevant Domains of Quality. 2000.

22. DiMatteo RM, et al. Americans' views of health professionals and the health-care system. Health Values 1995;19:23-9.

23. Gerteis M, Roberts MJ. Culture, leadership and service in the patient-centered hospital. In Through the Patient's Eyes: Understanding and Promoting Patient-Centered Care, edited by M Gerteis, S Edgman-Levitan, J Daley, et al. San Francisco: Jossey-Bass Publishers 1993;227-59.

24. Dholakia, Utpal M. An Investigation of the Relationship Between Perceived Risk and Product Involvement. Advances in Consumer Research 1997;24:159-67.

25. Block LG, Punam AK. When to accentuate the negative: the effects of perceived efficacy and message framing on intentions to perform a health-related behavior. Journal of Marketing Research 1995;32:192-203.

26. Zaltman G, Wallendorf M. Consumer Behavior: Basic Findings and Management Implications. 1979. John Wiley & Sons, Inc.

27. Smith GE, Wortzel LLH. Prior knowledge and the effect of suggested frames of reference in advertising. Psychology & Marketing 1997;14;2:121-43.

28. Bethell C, Read D, Hochheimer J. CAHPS 2.0H Child Survey with Children with Special Health Care Needs Module Inserted: HEDIS Work-up. 2000.

29. Hochhauser M. Health plan report cards: useful data or information overload? Managed Care On-Line. 2000.

30. Chernew M, Escarce JJ. Consumer response to quality information. Medical Care 36;7:943-4.

31. Chernew M, Scanlon DP. Health Plan Report Cards and Insurance Choice. 1998.

32. Epstein AM. Rolling down the runway: the challenges ahead for quality report cards. JAMA 1998;279:1691-6.

33. Hibbard J, Slovic P, Jewett J. Quality Reports that Support Informed Consumer Decisions: Draft. 1998.

34. Jewett JJ, Hibbard JH. Comprehension of quality care indicators: differences among privately insured, publicly insured, and uninsured. Health Care Financing Review 1996 18;1:75-94

35. McGee J. Field Testing To Improve Information Materials For Consumers: A Do-It-Yourself Guide. 1996.

36. NCQA. Do Consumers Use Health Plan Report Cards? A Summary of Findings from Two Evaluations. 1998.

37. Scanlon DP, Chernew M, Lave JR. Consumer health plan choice: current knowledge and future directions. Annu Rev Public Health 1997 18:507-28.

38. Scanlon DP, Chernew M, Sheffler S, et al. Health plan report cards: exploring differences in plan ratings. Journal on Quality Improvement 1998 24;1:5-20.

39. Schneider EC, Epstein AM. Use of public performance reports: a survey of patients undergoing cardiac surgery. JAMA 1998 279;20:1638-42.

40. Wicks EK, Meyer JA, Rybowski LS, et al. Report on Report Cards: Initiatives of Health Coalitions and State Government Employers to Report on Health Plan Performance and Use Financial Incentives. Economic and Social Research Institute, Volume 2. 1999.

41. State of Maryland. Comparing the Quality of Maryland HMOs: Consumer Guide to Commercial HMOs. Annapolis, MD: 2000.

42. PacifiCare. August 1999 Quality Index: Detailed Report. 1999.

43. Market Strategies. Development and Quality Measurement and Report System: PA/Focus Group Findings Final Report. 2000.

44. Burrus BB, McCormack LA, Garfinkel S, et al. Information Needs for Consumer Choice: Final Report. Research Triangle Institute. 1998.

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Current as of October 2000

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