7
Findings and Recommendations

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (RWCA) was first enacted in 1990 to provide funding to cities, states, and other public and private entities for care and support services to medically underserved, uninsured, and underinsured individuals with HIV disease. The CARE Act was refined and expanded during two subsequent reauthorizations in 1996 and 2000. The RWCA is the third-largest payer for HIV care behind Medicaid and Medicare, with a budget of $2 billion in fiscal year 2003 (HRSA, 2003). The RWCA is a program that has provided lifesaving care to millions of persons who otherwise would not have access to adequate services, and that has helped develop an infrastructure for providing high-quality care that would not exist in the absence of the Act. Furthermore, the Health Resources and Services Administration (HRSA), the agency that administers the RWCA, has been assertive and innovative in promoting quality-management and -improvement programs throughout the country.

Although the CARE Act program has been extremely successful, the complexity of the program and the changing HIV epidemic raise challenges with respect to the equitable allocation of resources and the maintenance of highest quality care. During the 2000 reauthorization of the Act, Congress asked the Institute of Medicine (IOM) to address three questions relating to (1) the inclusion of reported HIV cases, instead of only reported AIDS cases, in the RWCA Title I and II allocation formulas; (2) the data and methods that could be used to estimate severity of need



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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act 7 Findings and Recommendations The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (RWCA) was first enacted in 1990 to provide funding to cities, states, and other public and private entities for care and support services to medically underserved, uninsured, and underinsured individuals with HIV disease. The CARE Act was refined and expanded during two subsequent reauthorizations in 1996 and 2000. The RWCA is the third-largest payer for HIV care behind Medicaid and Medicare, with a budget of $2 billion in fiscal year 2003 (HRSA, 2003). The RWCA is a program that has provided lifesaving care to millions of persons who otherwise would not have access to adequate services, and that has helped develop an infrastructure for providing high-quality care that would not exist in the absence of the Act. Furthermore, the Health Resources and Services Administration (HRSA), the agency that administers the RWCA, has been assertive and innovative in promoting quality-management and -improvement programs throughout the country. Although the CARE Act program has been extremely successful, the complexity of the program and the changing HIV epidemic raise challenges with respect to the equitable allocation of resources and the maintenance of highest quality care. During the 2000 reauthorization of the Act, Congress asked the Institute of Medicine (IOM) to address three questions relating to (1) the inclusion of reported HIV cases, instead of only reported AIDS cases, in the RWCA Title I and II allocation formulas; (2) the data and methods that could be used to estimate severity of need

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act and related resource needs; and (3) available health outcome and other data that could be used to assess the quality of RWCA-funded services. These questions were motivated in part by several important aspects of the HIV epidemic and the health care system. Despite national guidelines recommending early access to medical care and treatment (Yeni et al., 2002; DHHS, 2003), an estimated 42 to 59 percent of the estimated 850,000-950,000 people living with HIV/AIDS in the United States are not in regular care (Fleming et al. 2002). Approximately one-quarter of all people with HIV do not know their HIV status (Fleming et al., 2002), and many others face financial and other barriers to accessing care (Kaiser Family Foundation, 2000). The cost of HIV care, which ranges between $10,000 and $12,000 annually per person for antiretroviral medications alone (Kahn et al., 2001), presents a formidable barrier to people with HIV/AIDS, many of whom are poor, unemployed, uninsured, or underinsured (Bozzette et al., 1998; Kaiser Family Foundation, 2000). Data suggest that although the quality of HIV/AIDS care has improved over time, both access to care and its quality vary by insurance status, race/ethnicity, and sex (Bozzette et al., 1998; Shapiro et al., 1999). Furthermore, many of the programs that provide care to individuals with HIV vary substantially in their eligibility and benefits across states, resulting in uneven access to care (Kaiser Family Foundation, 2000). Because of these factors, Congress, HRSA, and grantees have raised questions about whether the original strategies for allocating resources to those in greatest need are consistent with the current distribution of the disease across states and Eligible Metropolitan Areas (EMAs) and associated resource needs. An overarching concern was that current RWCA allocation strategies might not be as equitable as they could be because of perceived changes in the HIV epidemic. There was also a desire to facilitate efforts by HRSA to monitor and improve the quality of care supported by RWCA. Over the past decade, knowledge about how to assess and improve health care quality has dramatically improved. These developments, coupled with growing knowledge about disparities between what is possible and what is routinely achieved in many areas of care, led Congress to suggest that the Committee review current knowledge about ways of monitoring the quality of HIV care in the RWCA. The Committee focused on strategies and measures for federal resource allocation, evaluation of grantee applications, and assessments of the quality of care. The Committee’s specific recommendations are described in Chapters 4, 5, and 6 and are summarized in Box 7-1. In brief, the key messages from this report are: While the Committee supports Congressional intent to incorporate data into the RWCA allocation formulas that reflect the evolving

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act needs of the epidemic, the Committee finds that states’ HIV reporting systems are neither ready nor adequate for purposes of RWCA resource allocation. One state and one city have not implemented HIV case reporting, states’ HIV reporting systems are in different stages of maturity across the United States, and the Centers for Disease Control and Prevention (CDC) does not accept HIV cases from code-based reporting states into the national database. HRSA should continue to use estimated living AIDS cases for at least the next 4 years to allow for improvement in HIV reporting data, and development of alternative strategies to case reporting, such as survey- or model-based estimation. The Committee suggests two ways to improve HIV case reporting for RWCA resource allocation purposes. First, CDC should accept HIV data from all states, including code-based reporting states, into the national HIV/AIDS reporting database. CDC and code-based reporting states will need to develop algorithms to unduplicate these cases. Second, states and CDC should more fully utilize data from other sources, particularly laboratories, and potentially pharmacies, to enhance the relative completeness and timeliness of reporting across states and EMAs. Concerted effort should also be devoted to improving the comparability of HIV case reporting as quickly as possible. The Committee also highlighted several structural features of the current Title I and II allocation formulas that may not support the goal of equitable allocation and that could obviate any potential advantage of including HIV data in the formulas. The current process for distributing Title I supplemental awards to EMAs relies on nonstandard and unvalidated measures of local need, making objective assessments of relative needs across areas virtually impossible. The Title I supplemental award should be modified so that assessment of resource needs is based mostly on a small number of objective quantitative indicators that can be calculated by HRSA. The Committee recommends evaluating a social area indicators model and direct indicators as potential new methods of estimating resource needs. HRSA’s and RWCA grantees’ efforts to measure the quality of RWCA services are commendable. These quality-measurement activities should be expanded, however, to be more comprehensive with respect to types of measures, level of assessment, target populations, and spectrum of services. The questions Congress posed to the IOM were quite specific. Addressing these narrow questions, however, required consideration of several overarching issues that the Committee thinks Congress and HRSA should explore in future reauthorization discussions. First, current RWCA Title I and II formula allocations do not appear

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act to match the intent of the legislation to serve as a payer of last resort for uninsured and underinsured individuals with HIV/AIDS, because the formulas are based on all estimated living AIDS cases, with no adjustment for lack of or variations in insurance coverage across states and EMAs. Supplemental awards do consider variations in insurance coverage, but the data may be reported in inconsistent ways and the treatment of insurance is not explicit. Similarly, neither the formulas nor the supplemental award account for variations in the costs of providing care or among states and EMAs, or their fiscal capacity to provide care. Second, there is a pressing need to expand the focus of RWCA to include the entire population of HIV-infected persons, both in identifying those who are infected but not diagnosed or in care, and measuring the overall quality of care provided to individuals with HIV/AIDS. Need for care services begins at the time of infection; outreach is needed to facilitate early entry into care for those who are diagnosed with HIV and to encourage others to be tested. Better linkages are also needed between HIV testing and treatment programs. The ability of HRSA to assess variations in resource needs and quality of care is hampered by limitations in the available data. The ability to develop standardized, high-quality measures at the clinic and population level, in turn, is hindered by the limited resources of many grantees for collecting and reporting data. Future development of strategies for using data should consider the burden of data collection and reporting and help states and EMAs develop the technical skills and infrastructure necessary to provide standardized, timely information. Despite the many challenges facing the Ryan White CARE Act, it is, in many ways, an extraordinarily successful health care policy. It has allowed communities throughout the country to develop an infrastructure for providing care that would not otherwise be available for many individuals with HIV disease. Since its inception, Congress, HRSA, RWCA grantees, and other public and private partners have worked together to continuously refine and improve the allocation of resources and provision of high-quality services. The Committee hopes that the implementation of the proffered recommendations will continue that tradition and in some small way contribute to better care for persons with HIV infection.

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act BOX 7-1 Findings and Recommendations The Committee targets these and subsequent recommendations to several different entities including Congress, the Secretary of Health and Human Services (HHS), HRSA and CDC, and independent bodies. The Committee directs several recommendations (4.5, 5.2, 6.2c) to Congress that are related to the intent of the Ryan White CARE Act program. Many of the recommendations (4.2a, 4.2c, 4.4, 5.4, 6.2, 6.3) are targeted to the Secretary of HHS, who has broad oversight responsibilities for the implementation of the CARE Act. The Committee also targeted recommendations to the Secretary of HHS when the recommendations involved coordination among multiple agencies. Several recommendations involving specific technical issues are targeted to HRSA (4.1, 5.1, 5.3, 6.1, 6.2a, 6.2b) and CDC (4.2a, 4.2b, 4.2c, 4.3, 6.2b). In a few instances, the Committee makes recommendations that assessments be undertaken, or reviewed, by an independent body (4.3, 4.4). An independent body was specified when the recommendations required a broad assessment of the science base or when the Committee thought that an independent entity could protect the federal entities from any appearance of vested or conflict of interest, since those agencies would be applying the resulting methods. In some situations, an independent body was specified when it was thought that such an arrangement would minimize any inappropriate pressure on an agency from groups with vested interests in the outcomes of deliberations. Such pressure could inappropriately influence scientific assessments and/or result in strained relationships between agencies and their grantees or constituents. Additional resources may be required to implement some of the Committee’s recommendations. CHAPTER 4: HIV REPORTING DATA AND TITLE I AND II FORMULAS FINDINGS AND RECOMMENDATIONS Finding 4-1 While the Committee supports Congressional intent to incorporate data into the RWCA allocation formulas that reflect the evolving needs of the epidemic, the Committee finds that states’ HIV reporting systems are neither ready nor adequate for purposes of RWCA resource allocation. One state and one city have yet to implement HIV case reporting, states’ HIV reporting systems are in different stages of maturity across the United States, and the national HIV database does not include HIV cases from code-based reporting states. Finding 4-2 Different rates of completeness and timeliness of HIV reports across states and EMAs have the potential to create significant biases in RWCA formula allocations. To date, studies have not answered key questions about the comparability of HIV case-reporting data for use in resource allocation formulas. Additional studies are needed to examine the comparability of data from the HIV case-reporting system across states and EMAs.

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Finding 4-3 The Committee could not confirm the hypothesis that the maturity of the HIV epidemic varies significantly across regions. If the ratio of reported AIDS cases to HIV cases differs across states or EMAs, including data on HIV cases in the RWCA formulas could affect the relative measure of disease burden and the allocations. Data examined by the Committee suggest that the rate of new HIV infections is somewhat greater in the southeastern region of the United States. Due to the lack of HIV case data in all areas, however, assumptions regarding interregional variability in epidemic maturity need further assessment. Finding 4-4 When examining combined Title I and II funds, the Committee found that those awards depart from a nationwide standard of equivalent spending per unit of HIV burden. Although such departures may be appropriate, the justification for such departures was not clear. Such departures persist regardless of the measure of disease burden used, but they are most pronounced when using a combined measure of estimated HIV prevalence and AIDS prevalence. Finding 4-5 With the exception of San Francisco, Title I formula allocations per estimated living AIDS case (ELC) are quite uniform across EMAs. Because of hold-harmless provisions, the San Francisco EMA receives significantly greater resources per ELC than do other EMAs. Removal of this provision would reduce San Francisco’s allocation to within the reported range for other EMAs. However, removing the hold-harmless protection would have a small influence on other EMAs, which would observe a 2.6 percent increase in their allocation if San Francisco’s allocation were reduced. As noted by others (GAO, 2000), hold-harmless provisions have a small overall effect on allocations to EMAs, yet a large effect on a single EMA. Finding 4-6 Several structural features of the Title I and Title II funding formulas—most notably the counting of EMA cases in both Titles I and II state formula allocations, but also such measures as hold harmless provisions and set-asides for Emerging Communities—have a large influence on resulting allocations. Such structural features may dampen the effect of variation introduced by the addition of HIV cases, and could obviate the potential benefits of adding HIV cases to the CARE Act allocation formulas. Finding 4-7 RWCA Title I and II formula allocations are determined by the estimated number of living AIDS cases. Thus, they do not take into account factors defining those for whom such funds were intended, such as lack of insurance and special needs. That is, there are no provisions to estimate the number of persons in need of a “payer of last resort.” Finding 4-8 The completeness of the data from existing HIV case-reporting systems can be improved by making changes, specifically counting all HIV cases that are reported to the national system rather than only those reported

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act from states with name-based reporting, and more fully utilizing data from laboratories and other sources such as pharmacies to enhance the completeness of HIV reporting. Finding 4-9 Techniques exist to estimate the prevalence of HIV infection independently of the HIV case-reporting systems. Sample-based surveys and modeling approaches permit estimates of the total HIV-infected population, regardless of diagnostic status. Finding 4-10 A surveillance mechanism that provides information about the total population of persons with HIV infection, be they diagnosed or undiagnosed, is highly desirable. Knowing the size and distribution of the undiagnosed HIV-infected population is an important marker of success in providing care to all people with HIV. Recommendation 4-1 For at least the next 4 years, HRSA should continue to use ELCs in the RWCA Title I and II formulas. During that period, concerted effort should be devoted to improving the consistency, quality, and comparability of HIV case reporting. Specific attention should be paid to two, complementary approaches in this regard: (1) the attainment of coverage, maturity, and comparability standards and the development of de-duplication strategies that permit full use of all reported HIV cases; and (2) implementation of alternative strategies for estimating HIV cases, such as survey or model-based estimation. Recommendation 4-2 The following steps should be taken by states as quickly as possible to improve the consistency, quality, and comparability of HIV case reporting for RWCA allocation purposes. The CDC should accept reported HIV cases from all states. Until this occurs, large numbers of HIV cases will not be included in the national HIV reporting system, and there will be no reliable centralized way to use reported HIV cases to apportion CARE Act funds. CDC should work with all states to develop and evaluate methods for unduplicating HIV cases regardless of whether such cases are code- or name-based. The Secretary of HHS should provide CDC with the funding to provide the technical assistance to states necessary to support the integration of code with name-based data into the national HIV reporting database. Because of the importance of obtaining consistent data from all jurisdictions, the CDC should include HIV reporting data from code-based states and estimate the degree of overcounting due to duplication while procedures and infrastructure for definitive unduplication are developed. CDC should collaborate with all states to periodically assess and compare the completeness and timeliness of their HIV reporting systems. The Secretary of HHS should provide additional funds to CDC to assist states in improving the completeness and timeliness and overall comparability of their HIV reporting systems. Enhancing electronic laboratory

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act reporting in all states is critical in achieving this goal. Pharmacy-based surveillance, with a focus on the AIDS Drug Assistance Program (ADAP), is another potential source of information for enhancing completeness. Recommendation 4-3 CDC should obtain estimates of total HIV prevalence (including the undiagnosed population) and evaluate methods other than case reporting for use as an alternative or supplement in estimating HIV cases for RWCA Title I and II formula allocations, with advice and review by an independent body. This assessment should address the accuracy and costs of different strategies and should be repeated periodically. Recommendation 4-4 Prior to future reauthorizations of the CARE Act, the Secretary of HHS should initiate studies to improve the evidence base for understanding how well HIV case reporting and other methods for estimating HIV cases reflect the relative burden of disease and the relative resources necessary to respond to those needs in different areas. The Secretary should engage an independent body to estimate the dollar allocations that would result for Title I and II grantees from alternative input data and alternative RWCA allocation formulas. Specifically: “What-if” assessments should be reported every 5 years on the range of each EMA’s and state’s RWCA formula allocation, depending on whether ELCs or total HIV cases are used as the measure of disease burden. Analyses should be conducted to estimate the dollar allocations that would result from modifying different structural elements of the formula, such as: Hold-harmless provisions, The eligibility requirements for becoming an EMA, The percentage set-aside in the Title II base award for non-EMA states (currently 20 percent), The minimum base Title II award (now $500,000 for states and $50,000 for territories), The eligibility criteria for becoming a Tier 1 and Tier 2 emerging com munity. Evaluate the extent of interregional variability in HIV epidemic maturity and its effect on relative resource needs. These activities should be repeated periodically. Recommendation 4-5 In keeping with the CARE Act’s intent as a payer of last resort, Congress should reevaluate the RWCA formulas to determine whether they allocate resources in proportion to the estimated number of individuals with HIV/AIDS who are uninsured or underinsured in states and EMAs. Readily available data on the insurance coverage of the general population may mirror insurance coverage of people with HIV/AIDS, but additional estimation will likely be required.

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act CHAPTER 5: ESTIMATING RESOURCE NEEDS FINDINGS AND RECOMMENDATIONS Finding 5-1 Resource needs are determined by a complex array of factors, including disease burden, the costs of providing care, and available resources. These factors, for example insurance coverage or costs of care, vary widely across regions. RWCA formula allocations rely primarily on one measure of disease burden (i.e., ELCs) in determining awards, although this measure does not well reflect underlying variations in resource needs. Title I supplemental award is the largest RWCA grant program that attempts to take into account other factors affecting the complexity and costs of care. Finding 5-2 The current Title I supplemental award process, which is determined by competitive application, relies on nonstandard and unvalidated measures of local need. Simple, commensurable measures are preferable to complex idiosyncratic measures in allocating resources and their use would improve the award process and resulting allocations. Finding 5-3 The current Title I supplemental application process is burdensome for grantees. Given the high correlation between grantees’ per-ELC supplemental and base awards, the effort required for grantees to complete the application seems unjustified. Finding 5-4 Many publicly available data sources, including data routinely collected by HRSA/HIV/AIDS Bureau (HAB) and CDC, could be used to assess resource needs using indicators that are comparable across areas. Direct measures probably would yield the most valid measures of need, but would be more expensive and perhaps less feasible than indirect measures. Recommendation 5-1 HRSA should modify the Title I supplemental application process. The severity-of-need component of the Title I supplemental award should be based on two components: Quantitatively defined need, based on a small number of measures that can be calculated by HRSA/HAB. Locally defined need described in a short narrative by the applicant. Recommendation 5-2 A predominance of the weight for determining Title I awards should be given to the quantitative measure of resource needs that reflect variations in costs of care and fiscal capacity across EMAs. Recommendation 5-3 HRSA/HAB should evaluate the feasibility and usefulness of using social area indicator models based on publicly available data that are collected in standardized ways across jurisdictions, to estimate EMA-level resource needs for the Title I supplemental award. This approach also might be useful in assessing resource needs for other RWCA discretionary grant programs.

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Recommendation 5-4 The Secretary of HHS should evaluate the cost and utility of redesigning and coordinating studies conducted by HRSA/HAB and CDC to assess the specific needs and circumstances of people living with HIV. These data can be used to estimate resource needs and as part of quality-assessment activities. The Secretary should also assess the cost and utility of the indirect modeling approach described in Recommendation 5-3 for assessing regional variations in resource requirements. CHAPTER 6: MEASURING QUALITY OF CARE FINDINGS AND RECOMMENDATIONS Finding 6-1 The RWCA legislation’s emphasis on development of outcome measures is appropriate because tracking outcomes is a crucial element for accountability and helpful in quality improvement. However, outcome measures alone are not sufficient because outcomes may be influenced by many factors not under the control of grantees, and because structure and process measures can uniquely identify areas for specific improvement. Finding 6-2 Quality measures for HIV/AIDS that are in wide use are based on broadly accepted clinical guidelines and are appropriate. However, these measures are not standardized, which has hindered efficient evaluation of RWCA programs. Moreover, these measures are generally restricted to evaluating providers via examination of aggregated patient-level clinical data. Measures examining a more complete spectrum of services including, for example, those assessing support services, are important but are not yet in wide enough use to allow for consensus to emerge about specific measures for HIV care. Examples of potential measures of supportive services include the provision of case management, benefits advocacy, or substance abuse and mental health services. Finding 6-3 Measures of access to needed medical and nonmedical services are also lacking. Such measures have been developed for other diseases (e.g., cancer and heart disease) and could be adapted to HIV/AIDS. Examples of potential access measures include those that focus on continuity of care (e.g., identification of primary care provider), access to needed specialty care, and access to needed nonmedical care. Finding 6-4 Population-based measures are essential in monitoring HIV care in an EMA, region, or state and identifying areas for improvement. Current efforts to assess overall quality of care in EMAs and states are rudimentary and no population-based measures are in wide use. These measures should not be interpreted as direct measures of the quality of care being provided by specific clinics, but rather as reflecting the cumulative effects of many influences on case quality and outcomes. Additional work is needed to further develop these measures.

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act Recommendation 6-1 Quality measures: HRSA should adopt quality measures that are comprehensive with respect to populations (diagnosed in care; diagnosed but not in care; not diagnosed, not in care), level of assessment (provider and population levels), types of measures (structure, process, and outcome), and spectrum of services (clinical and supportive services). At a minimum, HRSA and grantees should strongly consider inclusion of the following standard set of measures to assess the quality of care provided by RWCA-funded providers and EMA and state-level programs. Standard definitions and detailed criteria for these measures need to be developed by HRSA in collaboration with grantees, affected communities, and other stakeholders after a rigorous examination of the importance, scientific soundness, and feasibility of potential measures. I. CLINIC LEVEL MEASURES A. Structure 1. Proportion of providers with appropriate expertise and experience in treating patients with HIV*   2. Availability of case management services B. Process Screening for: 3. Cervical cancer* 4. Hepatitis B   a. And administration of hepatitis B vaccine if negative 5. Hepatitis C* 6. Syphilis* 7. Toxoplasmosis 8. Tuberculosis* Performance of the following clinical monitoring tests: 9. CD4+ cell count and HIV viral load (process)* Antiretroviral treatment: 10. Provision of indicated antiretroviral treatment* 11. Provision of adherence counseling and monitoring Vaccinations and prophylaxis for opportunistic infections: 12. Influenza vaccination 13. Pneumoccocal pneumonia vaccination 14. Hepatitis B vaccination if patient not immune 15. If indicated, Mycobacterium avium complex (MAC) 16. If indicated, Pneumocystis carinii pneumonia* (PCP) C. Outcomes 17. Monitoring of CD4+ cell count and viral load values* 18. Proportion of patients with a history of an AIDS-defining opportunistic condition* 19. Proportion of patients who have >2 missed scheduled clinic appointments per year 20. Hospitalizations and emergency room visits without hospital admission* 21. Proportion of patients with unmet need for support services (e.g., assistance with obtaining housing).^

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act II. AREA (E.G., EMA OR STATE) LEVEL MEASURES   Outcome measures related to access and care: 22. Proportion of HIV-infected persons in an area who are not diagnosed^ 23. Proportion of diagnosed persons in area who are receiving regular care^ 24. Proportion of people with HIV who died within 12 months of an HIV diagnosis* 25. Proportion of people with HIV who progressed to AIDS within 12 months of initial HIV diagnosis* Key: * indicates high priority; ^ indicates high priority, but may require further development. Other measures are important, but of lower priority. Recommendation 6-2: Infrastructure development: The Secretary of Health and Human Services (HHS) should provide additional resources to HRSA and CDC to develop infrastructure for monitoring quality at the patient, clinic, and population levels. This infrastructure development strategy has three major components: HRSA should enhance support for information technology and personnel to enable clinics to collect, aggregate, and report a focused set of clinical and patient-reported data. HRSA should collaborate with CDC and other agencies to develop innovative population-based measures that can be captured using existing data sources or other community-based information-gathering activities, such as surveys of unmet needs. Congress should enhance flexibility in the administrative caps at the grantee level to promote infrastructure development. Recommendation 6-3 Collaborative quality activities: The Secretary of HHS should convene a working group, not restricted to, but including the National Committee on Quality Assurance (NCQA), state insurance commissioners, state Medicaid officials, and representatives from HRSA, CDC, the Centers for Medicare & Medicaid Services (CMS), providers of community, outpatient, and inpatient care, and members of the relevant research communities, to consider strategies for promoting greater collaboration between public health departments and public- and private-sector providers in order establish tools and methods to assess systems of care and quality, building on the successful collaborative models developed by the CDC for immunization (e.g., Clinic Assessment Software Application and Assessment Feedback Incentives Exchange).

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Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act REFERENCES Bozzette S, Berry SH, Duan N, Frankel MR, Leibowitz AA, Lefkowitz D, Emmons CA, Senterfitt JW, Berk ML, Morton SC, Shapiro MF. 1998. The care of HIV-infected adults in the United States. HIV Cost and Services Utilization Study Consortium. New England Journal of Medicine 339(26):1897–904. DHHS (Department of Health and Human Services). AIDSInfo: Overview of Guidelines. [Online]. Available: www.aidsinfo.nih.gov/guidelines [accessed July 31, 2003]. Fleming P, Byers R, Sweeney P, Daniels D, Karon J, Janssen R. 2002. HIV Prevalence in the United States, 2000. Presented at the 9th Conference on Retroviruses and Opportunistic Infections, Seattle, WA Abstract 11. GAO (General Accounting Office). 2000. Ryan White CARE Act: Opportunities to Enhance Funding Equity GAO/T-HEHS-00-150. Washington, DC: GAO. HRSA (Health Resources and Services Administration). 2003. CARE Act Overview and Funding History. [Online]. Available: ftp://ftp.hrsa.gov/hab/fundinghistory.pdf [accessed October 1, 2003]. Kahn JG, Haile B, Kates J, Chang S. 2001. Health and federal budgetary effects of increasing access to antiretroviral medications for HIV by expanding Medicaid. American Journal of Public Health 91(9):1464–73. Kaiser Family Foundation. 2000. Financing HIV/AIDS Care: A Quilt with Many Holes. Capital Hill Briefing Series on HIV/AIDS. Shapiro MF, Morton SC, McCaffrey DF, Senterfitt JW, Fleishman JA, Perlman JF, Athey LA, Keesey JW, Goldman DP, Berry SH, Bozzette SA. 1999. Variations in the care of HIV-infected adults in the United States: Results from the HIV Cost and Services Utilization Study. Journal of the American Medical Association 281(24):2305–15. Yeni P, Hammer SM, Carpenter CC, Cooper DA, Fischl MA, Gatell JM, Gazzard BG, Hirsch MS, Jacobsen DM, Katzenstein DA, Montaner JS, Richman DD, Saag MS, Schechter M, Schooley RT, Thompson MA, Vella S, Volberding PA. 2002. Antiretroviral treatment for adult HIV infection in 2002: Updated Recommendations of the International AIDS Society-USA Panel. Journal of the American Medical Association 288(2):222–35.

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