Monitoring HIV Care in the United States Indicators and Data Systems (2012) / Chapter Skim
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In 2011, the CDC estimated that about three in four people living with diagnosed HIV infection are linked to care within 3 to 4 months of diagnosis and that only half are retained in ongoing care. Treatment with antiretroviral therapy (ART)
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CHARGE TO THE COMMITTEE ONAP requested that the IOM convene a committee to identify critical data and indicators related to continuous HIV care and access to supportive services, as well as to monitor the impact of the NHAS and the ACA on improvements in HIV care. In addition, the committee was tasked with identifying public and private data systems that capture the data needed to
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The committee reviewed both HIV-specific data systems and data collection activities, such as epidemiologic studies of PLWHA and Ryan White HIV/AIDS Program data, and those that are not HIV specific but capture information on care received by PLWHA, such as Medicaid and Medicare claims data. The committee requested information from individuals who are familiar with the data systems and data collection activities in the areas of HIV testing and linkage to care, clinical care, access to care, treatment and adherence, financial security, need for supportive services, demographics, risk behavior assessment, and patient experience with care.
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from public and private HIV care databases to assess core indica tors related to continuous care and access to support services, such as housing, for people living with HIV?
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The committee's information gathering for the remaining aspects of its charge consisted of presentations before the committee during its open sessions and review of the research literature. COMMITTEE'S RECOMMENDATIONS Core Indicators Related to Continuous HIV Care and Access to Supportive Services The committee concluded that the primary challenges to optimal health outcomes for PLWHA include late diagnosis, delayed linkage to care for HIV, poor retention in care, delayed initiation of ART, and poor adherence to ART (i.e., discontinuing or intermittent use of ART)
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, or active Proportion who • housing received 2 or more tuberculosis who are • food or nutrition not on ART viral load tests • transportation Proportion immunized for hepatitis B Proportion of HIV (if needed) Proportion screened Proportion screened for mental health disorders infected pregnant for chlamydia, at least once in preceding 12 months women who are not gonorrhea, and on ART Proportion immunized syphilis for pneumococcal Proportion screened for substance use pneumonia disorders at least once in preceding 12 months Proportion screened for hepatitis C Proportion assessed for need for Proportion who • housing received drug Proportion immunized • food or nutrition resistance testing for influenza • transportation prior to ART initiation FIGURE S-1 Continuum of HIV care arrow mapped to indicators of HIV care and supportive services.
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The Department of Health and Human Services should use the following core indicators to assess the impact of the National HIV/AIDS Strategy and the Patient Protection and Afford able Care Act on improving HIV/AIDS care and access to supportive services for individuals with HIV: Core Indicators for Clinical HIV Care roportion of people newly diagnosed with HIV with a CD4+ cell P count >200 cells/mm3 and without a clinical diagnosis of AIDS roportion of people newly diagnosed with HIV who are linked to P clinical care for HIV within 3 months of diagnosis roportion of people with diagnosed HIV infection who are in P continuous care (two or more visits for routine HIV medical care in the preceding 12 months at least 3 months apart) roportion of people with diagnosed HIV infection who received P two or more CD4 tests in the preceding 12 months roportion of people with diagnosed HIV infection who received P two or more viral load tests in the preceding 12 months roportion of people with diagnosed HIV infection in continuous P care for 12 or more months and with a CD4+ cell count ≥350 cells/ mm3 roportion of people with diagnosed HIV infection and a measured P CD4+ cell count <500 cells/mm3 who are not on ART roportion of people with diagnosed HIV infection who have been P on ART for 12 or more months and have a viral load below the level of detection ll-cause mortality rate among people diagnosed with HIV A infection
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In addition, the committee was specifically asked to address core indicators relating to "access to support services, such as housing," as well as those relating to continuous care. The fact that indicators for supportive services may be difficult to estimate did not preclude the committee from including them as core indictors.
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Recommendation 2-2. The Department of Health and Services and the Office of Management and Budget should continue to expand the demographic data elements to be captured by federal data systems rel evant to HIV care to permit calculation of the indicators for subgroups of the population of people with diagnosed HIV infection, including, but not limited to, the following: Age Race Ethnicity Sex (assigned at birth)
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Proportion of people newly diagnosed with HIV who are linked to clinical care for HIV within 3 months of diagnosis Rationale: Timely linkage to care improves individual health outcomes and reduces transmission of the virus to others. Proportion of people with diagnosed HIV infection who are in continuous care (two or more visits for routine HIV medical care in the preceding 12 months at least 3 months apart)
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Mortality among PLWHA should be inversely related to the quality of overall care delivered. Core Indicators for Mental Health, Substance Abuse, and Supportive Services Proportion of people with diagnosed HIV infection and mental health disorder who are referred for mental health services and receive these services within 60 days*
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Sources of Data on HIV Care to Assess Core Indicators and Access to Supportive Services Data on HIV care and supportive services are currently being collected by a number of public and private data systems. Although no single data system on its own provides all of the data needed to estimate the indicators recommended by the committee (listed above)
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The committee's review showed that each data system has limitations. For example, few contain all of the data elements needed to estimate all of the indicators recommended by the committee, especially those for mental health, substance abuse, and supportive services (housing, food security, transportation)
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to estimate the core indicators for HIV care identified by the committee. In addition, collection of longitudinal data on the initiation and ongoing prescription or dispensing of antiretroviral therapy for individuals diagnosed with HIV would provide the remaining data elements necessary to use the NHSS as a source of data to estimate all of the core clinical HIV care indicators.
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and Kaiser Permanente, capture all, or most, of the data elements needed to estimate the clinical HIV care indicators recommended by the committee. They also generally capture at least some of the information needed to estimate the indicators pertaining to mental health and substance abuse, but they do not routinely capture data needed to estimate the indicators pertaining to supportive services.
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Although important to patient privacy, the often inconsistent nature of these protections, which leave the decision of whether or not to disclose requested patient information open to various interpretations, may result in discrepancies in data sharing and reporting across states and providers. Such discrepancies may influence the availability and quality of data needed to estimate indicators of HIV care and supportive services.
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The Role of Health Information Technology and Data System Integration in the Collection of HIV Care Data Increased exchange of health-related information across providers of HIV care and supportive services has the potential to improve care coordination and longitudinal tracking of care. Some integrated health care systems, such as the VHA and Kaiser Permanente, effectively manage information across providers within their networks, but most PLWHA receive care and supportive services outside of these networks, and many receive care across multiple organizations.
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At least once every 2 years, the Department of Health and Human Services should reevaluate mechanisms for combin ing data elements to estimate key indicators of HIV care and access to supportive services, analyze the combined data, and identify and ad dress barriers to the efficient analysis of such data, including relevant statistical methodologies. To facilitate this process, HHS should engage a center of excellence representing broad areas of expertise that include information technology, statistical methodologies for combining data, and data system content.
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