Measuring What Matters Allocation, Planning, and Quality Assessment for the Ryan White CARE Act (2004) / Chapter Skim
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Executive Summary
Executive Summary
Pages 1-26
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. HIV infection causes progressive damage to the immune system by destroying white blood cells called CD4+ T-lymphocytes.
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Act, enacted in 1990 and reauthorized and amended in 1996 and 2000, provides funding to cities, states, and other public and private entities to provide care and support services to individuals with HIV and AIDS who have low incomes and little or no insurance (Ryan White CARE Act.
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: · To assess whether reported HIV cases are adequate, reliable, and sufficiently accurate for inclusion in formula grants under Titles I and II of RWCA and to make recommendations for the improvement of HIV reporting systems (discussed in Chapter 4)
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recommendations regarding the manner in which the State can improve the system." Information for Estimating Severity of Need for Resources ·"Existing and needed epidemiological data and other analytic tools for resource planning and allocation decisions, specifically for estimating severity of need of a community and the relationship to the allocations process." Quality-of-Care Measures · "The availability and utility of health outcome measures and data for HIV primary care and support services and the extent to which those measures and data could be used to measure the quality of such funded services"; and · "other factors determined to be relevant to assessing an individual's or community's ability to gain and sustain access to quality HIV services." NOTE: The Ryan White CARE Act Amendments of 2000 also directed the IOM to study the public financing and delivery of HIV care. HRSA commissioned a separate IOM study to address those issues.
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. The legislation authorized the IOM to assist the Secretary in assessing the readiness of states to produce adequate and reliable HIV case-reporting data, determine the accuracy of using HIV cases within the existing allocation formulas, and establish recommendations regarding how states could improve their HIV case-reporting systems (Ryan White CARE Act.
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. Thus, the Committee focused on whether incorporating HIV reporting into the RWCA formulas would provide a better representation of HIV disease-related resource needs across jurisdictions and more fairly channel scarce RWCA resources.
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Comparability of HIV Reporting Data Even if all states were capable of providing data on HIV cases, data should be of comparable quality across jurisdictions before they are used in the RWCA formulas, or the differential errors should be such that incorporating the data increases -- rather than decreases -- the equity of the resulting RWCA allocations. Differential rates of completeness and timeliness of HIV reporting, and the migration of people living with HIV across jurisdictions, have the potential to create significant biases in allocations.
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places them at a disadvantage in RWCA formula allocations. If, however, the epidemic is at similar levels of maturity across jurisdictions, and therefore the ratio of reported AIDS cases to reported HIV cases is relatively constant, including data on HIV cases in the formula will, in fact, have little influence on the relative measure of disease burden, and hence little influence on the resulting awards.
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Sensitivity of Formula Allocations to Changes in the Underlying Input Data For HIV reporting data to more fairly channel resources, allocation formulas need to be sensitive to changes in the underlying data. The Committee could not examine the impact of including HIV data in the formula because data on HIV cases were not available from all states, including several key states with a high disease burden.
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Greater use of electronic laboratory reporting, and potentially the use of data from pharmacies, could enhance the comparability of HIV reporting data across states in terms of completeness and timeliness. Name-based reporting is cited as one way to facilitate elimination of duplicate reports (CDC, 1999)
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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, and 6.3)
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The Secretary of HHS should pro vide 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 im portance 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 de veloped.
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Recommendation 4-4 Prior to future reauthorizations of the CARE Act, the Secretary of HHS should initiate studies to improve the evi dence base for understanding how well HIV case-reporting and other methods for estimating HIV cases reflect the relative burden of dis ease 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 Titles I and II grantees from alternative input data and allocation formulas.
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conclude that reported HIV cases do not result in more equitable resource allocation so that Congress can reconsider its recommendation prior to implementation in FY2007. ESTIMATING RESOURCE NEEDS RWCA attempts to direct funds to areas in greatest need of financial assistance through several discretionary grants programs, including Title I supplemental awards, Title II ADAP supplemental awards, and Titles III and IV awards.
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Resource needs can be viewed as a product of disease burden and cost of care minus available resources: Resource needs = (Disease burden * Costs of providing care)
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(Details of this analysis are presented in Chapter 5 and Appendix D.) Accordingly, the Committee recommends the following: Recommendation 5-3 HRSA/HAB should evaluate the feasibility and usefulness of using social-area indicator models that are 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.
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, the Committee felt it could best contribute by providing a framework, criteria, and process for selecting measures that can evolve with the epidemic. Conceptual Framework HIV quality assessment can be thought of as having four key dimensions: the population of interest, the level assessed, the type of measures employed, and the spectrum of services to be evaluated.
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For this reason, process measures are often used in lieu of outcome measures at the program or clinic level, while the monitoring of outcomes is both a simpler and more compelling way of assessing the impact of all care provided in an area. Spectrum of Services: Both primary care and support services are essential components of high-quality care.
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Finally, the Committee found that all measures focused on the provider level, and that no population-level process or outcome measures of quality were in routine use, despite their importance as an indicator of the overall impact of an area's epidemic and prevention/treatment/support programs. Based on its review of selected quality-of-care measure sets, the Committee recommends a standardized set of structure, process, and outcome quality measures for assessing and facilitating quality improvement at the clinic level and at the EMA/state levels (See Recommendation 6-1)
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A critical step in moving from the current situation of uncoordinated data collection to a more standardized approach would entail reaching a consensus on how different indicators should be defined and implemented, and then putting into place a mechanism for ensuring the quality of the ensuing data. Although there are many ways of doing this, the National Committee on Quality Assurance (NCQA)
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AREA-LEVEL MEASURES (E.G., EMA OR STATE) Outcome measures related to access and care: 22.
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With the advent of HAART and the availability of a wide array of other support services and prevention efforts for HIV-infected individuals, it is essential to promote efforts to make individuals aware of their status and to facilitate their entry into care. Significant and continued improvements in long-term morbidity and mortality related to HIV will not occur unless these individuals are under appropriate care.
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Similarly, it proposes a framework for assessing quality of care provided to HIV-infected persons, and several specific steps that could be taken to build on existing work and develop a national, standardized approach to quality assessment. Such refinements in the approach to distributing and evaluating the impact of RWCA resources could help the CARE Act remain a pathbreaking approach to providing care to some of the nation's most vulnerable citizens.
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1995. Ryan White CARE Act of 1990: Opportuni ties Are Available to Improve Funding Equity.
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2000d. Ryan White CARE Act Amendments of 2000 -- Manag ers' Statement of Explanation.
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