Monitoring HIV Care in the United States Indicators and Data Systems (2012) / Chapter Skim
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3 Sources of Data on HIV Care to Assess Indicators of HIV Care and Access to Supportive Services
3 Sources of Data on HIV Care to Assess Indicators of HIV Care and Access to Supportive Services
Pages 127-236
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From page 127... ...
IDENTIFICATION OF DATA SYSTEMS To identify the best public and private sources of data to estimate the indicators related to continuous HIV care and access to services for PLWHA, the committee first compiled an initial list of 32 public and private data systems or data collection agencies, including those that are HIV specific and those that are not HIV specific but include information on PLWHA. The list included data collection efforts and systems highlighted in the project proposal as well as others identified by committee members as important or potential sources of information on PLWHA, including care 127
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From page 128... ...
The committee took account of these factors when considering which data systems, individually and in aggregate, would be most helpful for estimating the indicators presented in Chapter 2 and for assessing the impact of the NHAS and the ACA in improving HIV care in the United States. The committee identified 12 data systems it considered to be most useful for tracking the impact of the NHAS and the ACA on HIV care in the United States: • National HIV Surveillance System • Medical Monitoring Project • Ryan White Services Report • Ryan White AIDS Drug Assistance Program Reports • Medicaid Statistical Information System • Chronic Condition Data Warehouse • North American AIDS Cohort Collaboration on Research and Design • CFAR Network of Integrated Clinical Systems • HIV Research Network • Clinical Case Registry: HIV 1 Complete descriptions of ECHPP and the 12 Cities Project are provided later in this chapter.
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From page 129... ...
129 SOURCES OF DATA BOX 3-1 Data Collection Activities Considered by the Committee HIV Care–Specific Data Systems Public • National HIV Surveillance System • Medical Monitoring Project • yan White HIV/AIDS Program (Ryan White Services Report; Ryan White R AIDS Drug Assistance Program Reports; Ryan White Dental Services Report) • Clinical Case Registry: HIV • Housing Opportunities for Persons with AIDS • Minority AIDS Initiative • HIV Outpatient Study • tudy to Understand the Natural History of HIV/AIDS in the Era of Effec S tive Therapy • Enhanced Comprehensive HIV Prevention Planning Project • 12 Cities Project Private • North American AIDS Cohort Collaboration on Research and Design • CFAR Network of Integrated Clinical Systems • HIV Research Network • AIDS United Data Systems with Information that Includes People Living with HIV Public • Medicaid Statistical Information System • Chronic Condition Data Warehouse • Resource and Patient Management System • Bureau of Prisons Electronic Medical Record • B ureau of Primary Health Care–Federally Qualified Health Center Uniform Data System • Substance Abuse and Mental Health Services Administration • Healthcare Cost and Utilization Project • National Ambulatory Medical Care Survey • National Hospital Ambulatory Medical Care Survey • National Vital Statistics System Private • rivate health insurers (Aetna, Kaiser Permanente, United Health [Ingenix P Normative Health Information Database®]
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From page 130... ...
Although no single data system can fully track the progress of the NHAS and the ACA, the committee concluded that a combination of these 15 data systems can provide a collective platform for helping to evaluate these initiatives and for estimating the indicators identified to measure the quality of HIV care and access to supportive services. Appendix Tables 3-2a through 3-2e show which of the data elements associated with the indicators are available in each data system.
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From page 131... ...
Appendix Table 3-4 lists the publicly available data collection instruments for the data systems discussed, which provide a comprehensive picture of the data elements captured by each.
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From page 132... ...
For example, the time between diagnosis and initial (or second) CD4 and viral load test can serve as a surrogate for the length of time between diagnosis and entry into care, and the number of routine HIV care visits per year may be estimated from the number of HIV-related lab reports per year.
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From page 133... ...
In terms of the data elements required to assess the core indicators for clinical HIV care, the NHSS, as previously noted, currently captures the individual's date of diagnosis and the dates and results of the individual's first and most recent viral load test and the CD4 test at, or closest to, the date that the individual was determined to be HIV-infected or to have AIDS (see Appendix Table 3-2a) , as well as the first CD4+ cell count <200 cells/mm3.
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From page 134... ...
Collection of such data, especially if the Ryan White HIV/ AIDS Program were added to the list of reimbursement source checkboxes provided on the form, would permit the use of NHSS data to estimate the indicators for the subpopulations specifically identified in the NHAS and would help to facilitate the evaluation of data across data systems as discussed in Chapter 6. Uniform reporting to CDC of ongoing CD4 and viral load test dates and results from all jurisdictions and collection of longitudinal information on ARV usage would permit the use of data from the NHSS to assess all of the core indicators for HIV care identified by the committee.
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From page 135... ...
MMP captures most of the data elements needed to assess all of the indicators identified by the committee (see Appendix Tables 3-2a to 3-2e and 3-3a to 3-3c) , including data on supportive services, which makes it an attractive source of data.
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From page 136... ...
2011) , medical record abstraction is another component of MMP (CDC, 2009, pp.
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From page 137... ...
. Although limiting medical record abstraction to the preceding 12 months likely will expedite collection of the data, certain data elements required to estimate some HIV care indicators may no longer be captured.
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From page 138... ...
of federal spending for HIV care was allocated to the Ryan White Program in FY 2011 (Kates, 2011, p.
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From page 139... ...
The client report also collects data specific to a number of the additional clinical HIV care indicators (Appendix Tables 3-2c, 3-3c)
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From page 140... ...
Appendix Tables 3-3a through 3-3d map the committee's indicators to the various data elements that are or will be captured by the ADAP reports.14 The ADAP reports do not supplement the data already captured in the RSR in terms of those needed to evaluate the committee's indicators. However, for the population of ADAP clients who do not receive other Ryan White 14 N odata elements from the ADAP Quarterly Report that are pertinent to the committee's indicators will be dropped in moving to the ADR, although new data elements of interest will be added.
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From page 141... ...
The committee supports HRSA's intention to merge the client-level data from the RSR and the ADR into a single system. Ryan White HIV/AIDS Program data are an important source of information for monitoring access to quality HIV care and supportive services because of the population represented and the importance of the program in providing care and services to many disadvantaged populations.
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From page 142... ...
Such services include mental health and substance abuse treatment visits and housing, food, and transportation services. An organization might receive funding from a number of different sources, and if a client were to receive some services funded, at least in part, through the Ryan White HIV/AIDS Program and other services funded exclusively by another source, only the former would be reported to HRSA.
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From page 143... ...
Absent reporting of all supportive service utilization, an indication of whether clients had received any non-Ryan White-funded services would allow analyses of Ryan White HIV/ AIDS Program data to be stratified accordingly. Medicaid Statistical Information System Medicaid is the largest safety-net health insurance program in the United States, providing health and long-term care coverage to more than 59 million low-income and disabled beneficiaries (KFF, 2011a)
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From page 144... ...
. The resulting increase in Medicaid's role in covering care for PLWHA makes MSIS a particularly important source of data for tracking the impact of the ACA on HIV care.
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From page 145... ...
Appendix Tables 3-2a through 3-2e summarize which data elements of interest to the committee are captured in MSIS. One challenge of using MSIS or MAX data is identification of the population of PLWHA who are Medicaid beneficiaries.
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From page 146... ...
. Similar to the cases in which Ryan White HIV/AIDS Program data include only Ryan White–funded services, even if the MSIS data were complete and accurate, state variation in covered services beyond a set of "mandatory" services required to receive matching federal funds and service payment structure (fee-for-service versus prepaid plans)
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From page 147... ...
With respect to the core indicators of HIV care, MSIS could be expected to provide the data needed to assess the indicators pertaining to continuity of care and regular CD4 and viral load testing, based on claims submitted for office visits with HIV listed as one of the diagnosis codes and claims submitted for CD4 and viral load tests, all of which capture dates of service (see Appendix Table 3-3a)
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From page 148... ...
, MSIS could provide data to assess the clinical HIV care indicators relating to TB, sexually transmitted infections (STIs) , and hepatitis B and C screenings, along with influenza, pneumococcal pneumonia, and hepatitis B immunizations, although clinical information about whether the TB test results were interpreted or hepatitis B immunity was documented would not be available.
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From page 149... ...
With the evolution of HIV into a chronic condition, many PLWHA are living longer and increasingly are expected to qualify for Medicare on the basis of age, resulting in an increase in the number Medicare beneficiaries with HIV. Given Medicare's Part D prescription drug coverage and the increasing number of Medicare-eligible PLWHA, Medicare plays an important role in HIV care coverage.
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From page 150... ...
As a source of claims data, Medicare is similar to Medicaid in terms of the data available to assess the core indicators of HIV care. It should be able to inform indicators related to continuity of care, regular CD4 and viral load testing, and mortality rate, but it does not contain the information necessary to evaluate the linkage-to-care indicator or the clinical data needed to assess the other core HIV care indicators.
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From page 151... ...
; date of first visit at the clinical site and whether the individual was previously seen at another site (but not always the date of first-ever visit for HIV care) ; dates of routine HIV care visits; CD4 and viral load test dates and results; dates that individual ARVs were started or stopped; year of birth; and mortality information (date and cause of death)
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From page 152... ...
Data collected by NA-ACCORD can be used to estimate all of the core indicators of clinical HIV care. The data system is less useful for estimating the additional clinical care indicators and much less so for indicators pertaining to mental health, substance abuse, and supportive services.
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From page 153... ...
For the additional clinical HIV care indicators (Appendix Tables 3-2c, 3-3c) , CNICS collects data on diagnosis of AIDS-defining conditions; hepatitis B and C; chlamydia, gonorrhea, and syphilis screening; ART drug resistance testing; and diagnosis of renal disease.
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From page 154... ...
The data from each site are sent to the data coordination center at the Johns Hopkins School of Medicine, where they are consolidated into a single uniform database. HIVRN data can be used to estimate all of the core clinical HIV care indicators identified by the committee.
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From page 155... ...
Data needed to calculate all of the core clinical HIV care indicators and most of the additional clinical care indicators are available from the EHR if the services are performed within the VHA system (Appendix Tables 3-2a, 3-2c, 3-3a, 3-3c)
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From page 156... ...
A major benefit to a robust EHR system is the availability of data on both service utilization and clinical outcomes. KP captures all of the data elements necessary to assess the core indicators of clinical HIV care, although the date of HIV diagnosis is only captured for individuals diagnosed within the KP system (Appendix Tables 3-2a, 3-3a)
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From page 157... ...
is the best source of data for estimating mortality related to HIV infection. Although some of the data systems examined by the committee, such as NA-ACCORD, record information on cause of death, the NVSS regularly calculates HIV mortality.
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From page 158... ...
. Although some IHS clinics provide limited HIV care services, most refer their HIV clients to outside providers for HIV care (GAO, 2007; IHS response to IOM request for information, March 28, 2011)
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From page 159... ...
that may be relevant for monitoring HIV care (see IHS, 2011c)
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From page 160... ...
Similarly, the IHS captures the data pertinent to the additional clinical HIV care indicators (Appendix Tables 3-2c, 3-3c)
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From page 161... ...
. Due to the much larger number of HIV-infected inmates in state prisons, it would be necessary to track HIV care data from the state inmate population as well in order to gain a more complete picture of HIV care within the U.S.
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From page 162... ...
The additional supportive services most relevant to the indicators identified by the committee include meals and nutritional services, transportation services, mental health services, and alcohol and drug abuse services, as well as approved health, medical, and intensive care services (HOPWA, 2011a,b)
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From page 163... ...
The program-specific data elements include the amounts and sources of income, if any, in the preceding 30 days; receipt of noncash benefits (e.g., Medicare, Medicaid, Supplemental Nutrition Assistance Program) ; and information on physical and developmental disability, chronic health conditions, HIV/AIDS, mental health, substance abuse, domestic violence, and destination upon program exit (HUD, 2010, pp.
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From page 164... ...
. SIMILAR DATA COLLECTION EFFORTS Several additional data collection efforts are under way that will provide useful information for assessing the impact of the NHAS and ACA on HIV care, including CDC's Enhanced Comprehensive HIV Prevention Planning Project, HHS's 12 Cities Project, and the Nationwide Health Information Network Exchange.
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From page 165... ...
These enhanced prevention plans, which have been approved by CDC, include interventions and public health strategies designed to prevent new HIV infections and to promote HIV care and treatment. By the end of 2011, the jurisdictions had begun implementing their plans and had submitted funding applications for the second and third years of the project.
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From page 166... ...
Although the jurisdictions included in the 12 Cities Project represent a large percentage of the U.S. population of PLWHA, use of a common set of core indicators across all federally funded HIV/AIDS programs nationwide will generate a more complete picture of HIV care in the United States.
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From page 167... ...
The committee identified 12 data systems in particular that collect data of use for estimating the core indicators to moni tor progress toward meeting the goals of the NHAS and ACA: National HIV Surveillance System Medical Monitoring Project Ryan White Services Report Ryan White AIDS Drug Assistance Program Reports Medicaid Statistical Information System Chronic Condition Data Warehouse orth American AIDS Cohort Collaboration on Research and N Design CFAR Network of Integrated Clinical Systems HIV Research Network Clinical Case Registry: HIV Kaiser Permanente National Vital Statistics System Two additional data systems provide information of use in track ing the impact of the initiatives on care for two small but impor tant subpopulations of HIV-infected individuals (AI/ANs; federal prisoners) , and a third provides information relevant to housing assistance and other supportive services for PLWHA: Resource and Patient Management System Bureau of Prisons Electronic Medical Record Housing Opportunities for Persons with AIDS • The committee's review of federal data systems relevant to HIV care showed they capture a wealth of data that can be used to
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From page 168... ...
The committee concluded, however, that more modest changes in individual data systems could improve the usefulness of their data for tracking changes in HIV care and access to supportive services for people living with HIV. For example, a given data system might add one or more data elements or modify an existing data element to allow the system to provide data for estimating a subgroup of the indicators identified by the committee, such as those pertaining to supportive services (housing, food security, transportation)
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From page 169... ...
for individuals in the National HIV Surveillance System • The committee's review of data systems relevant to HIV care showed that clinically based EHR systems (e.g., VHA, KP, IHS, BOP) capture all, or most, of the data elements needed to estimate the clinical HIV care indicators identified by the committee.
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From page 170... ...
The Department of Health and Human Services, the Department of Veterans Affairs, the Indian Health Service, the Federal Bureau of Prisons, and other relevant federal agencies should use existing data from private data systems, includ ing data from electronic health records, to monitor the impact of the National HIV/AIDS Strategy and the Patient Protection and Affordable Care Act on improving HIV care. Federal agencies also should share data pertaining to HIV care with private health care systems and providers to improve the quality of care for individu als with HIV.
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From page 171... ...
2010. Summary of Changes to the National HIV Surveillance Report.
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From page 172... ...
2007. Cohort Profile: The North American AIDS Cohort Collaboration on Research and Design (NA-ACCORD)
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From page 173... ...
2011. IOM Review of Data Systems Monitoring HIV Care in the U.S.: CNICS and NA-ACCORD.
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From page 174... ...
2011. Sticky dollars: Inertia in the evolution of federal alloca tions for HIV care through the Ryan White Program.
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From page 175... ...
2011. The Federal Bureau of Prisons Electronic Medical Record (BEMR)
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176 MONITORING HIV CARE IN THE UNITED STATES Valdiserri, R., and A Forsyth.
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177 SOURCES OF DATA APPENDIX TABLE 3-1 follows on next page
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From page 178... ...
a health diagnosed reports of of diagnosed surveillance, with HIV/ diagnosis -- 2009 data PLWHA state- AIDS • Lab reports for 46 states • Includes mediated of CD4 and 5 U.S. PLWHA out of mandatory counts and dependent care reporting viral load areas with by all • State health confidential jurisdictions department name-based • Longitudinal reporting reporting from time of diagnosis aEstimated number following statistical adjustment for reporting delays and missing risk factor information, but not for incomplete reporting (http://www.cdc.gov/hiv/surveillance/ resources/reports/2010report/pdf/2010_HIV_Surveillance_Report_vol_22.pdf#Page=52, accessed March 21, 2012)
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From page 179... ...
179 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Population-based • Clinical data • Addition • Number may census elements limited to of payer increase and • Includes individuals CD4 and viral load information become more not in care tests, with optional • Addition of comprehen• Not limited to one fields for ART and employment sive as more type of payer pregnancy status status, individuals with • Definitions of • Not all jurisdictions income, sexual HIV/AIDS are variables and report lab results orientation identified with reporting methods longitudinally • Addition of increased access standardized • Inability to track ART status to health care • Trend data routinely individuals across (whether coverage available reporting areas receiving) • Many highest • Inaccurate/ • Work with priority indicators incomplete reporting states to extend can be calculated • Not yet complete for reporting of • Can be used to jurisdictions without all CD4 and monitor disparities mature name-based viral load lab re: gender, race/ reporting results to all ethnicity, region jurisdictions • Possible to link with other data systems maintained at local level (e.g., Ryan White Services Report; Homeless Management Information System)
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From page 180... ...
b design receiving record receiving • Repeated outpatient abstraction outpatient cross- care medical care in sectional United States probability and Puerto sample Rico bThe 2009 collection cycle data were weighted to estimate nationally representative percentages of HIV-infected adults receiving medical care in the United States.
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From page 181... ...
181 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Most indicators can • Low individual • Take steps • Sample may be calculated participation rate in to improve be expected to • Includes data on 2007 cycle participation reflect greater supportive services • 2007 data rates and make number of • 2009 data cycle unweighted sample more PLWHA not weighted to • Possibility of social nationally previously in estimate nationally desirability response representative care, as number representative bias for in-person particularly of persons in percentages of adult interviews among hard care increases PLWHA in care • Some clinical to reach • Not limited to information (e.g., populations patients receiving date of HIV such as care through a diagnosis and date of homeless specific payer first entry into care) • Create a is self-reported mechanism • Stratification to allow by certain supplemental characteristics questions to produced numbers be added as too small for reliable needed to interpretation capture salient • Only includes data (e.g., with individuals who are specific ACA in care implementation issues and how they might affect patients)
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From page 182... ...
182 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-1 Continued Population How Design Covered Source of Data Number Representative Ryan White Services Report (Health Resources and Services Administration) • HRSA/HAB • HIV-infected • Ryan White • >500,000 • Representative mandatory individuals grantees and HIV-infected of clients reporting for receiving contracted individuals receiving Ryan Ryan White at least one service White funded HIV/AIDS Ryan White providers services Program service • Not • Grantee grantees and Report: representative contracted summary of national service of RW population of providers providers PLWHA in the in the United States jurisdiction and services they offer • Service Provider Report: basic information about the organization; lists service provider contracts for reporting period • Client Report: client-level demographic information; HIV clinical information; HIV medical, health care, and support services received
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From page 183... ...
183 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Most indicators • Grantees/providers • Report all client • Anticipated (or a proxy) can be are not required to service data shift in clientele calculated report client service regardless of and services • Includes data on data for services not funding source • Reduced supportive services, paid for by the Ryan dependency such as need for White HIV/AIDS on program and use of housing, Program (may result to meet health food, transportation in client-level data service needs services for people gaps)
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From page 184... ...
(client-level data) • Demographic variables may be self-reported • Clinical data must be from lab report, clinical documenta tion, or HIV surveillance program
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From page 185... ...
185 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Data are aggregate • Contains only limited data, mostly demographic • Scheduled to be replaced by ADAP Data Report beginning with April 1–September 30, 2012, collection period • Client-level data • Provides information • Capture only on medications dispensing that are fully funded information by ADAP for all ADAP formulary drugs regardless of funding source continued
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From page 186... ...
186 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-1 Continued Population How Design Covered Source of Data Number Representative Medicaid Statistical Information System (Centers for Medicare & Medicaid Services) • Health care • HIV- • Claims and • 212,892 • Representative claims and diagnosed eligibility HIV-infected of PLWHA eligibility individuals data individuals enrolled in enrolled in reported by (FY2007)
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From page 187... ...
187 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Represents largest • Utilization data only: • Anticipated single source of No clinical outcome increase in care coverage for data enrollment PLWHA: Medicaid • No data on housing, with increased enrollees account food, transportation eligibility for 47 percent of services provisions PLWHA estimated • Challenging to in ACA: to be in regular care identify HIV-positive magnitude Medicaid recipients likely to vary • Incomplete data greatly across on services for states beneficiaries in managed care • Diagnostic and service information dependent on codes entered on claims potentially resulting in incomplete data • Variations in Medicaid eligibility resulting in enrollment lapses continued
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From page 188... ...
188 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-1 Continued Population How Design Covered Source of Data Number Representative Chronic Condition Data Warehouse (Centers for Medicare & Medicaid Services) • Health care • HIV- • Claims data • Approximately • Approximately claims diagnosed submitted by 100,000 20 percent individuals health care HIV-infected of PLWHA enrolled in providers individuals estimated to be Medicare receiving care in the United States • PLWHA who are disabled or age 65 or older • 29 percent of HIV-infected Medicaid enrollees are dually eligible for Medicare
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From page 189... ...
189 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Represents • Primarily fee-for- • Designate HIV/ • Potentially approximately 20 service utilization AIDS as one of more claims percent of PLWHA data the predefined for Medicare in care • Limited data chronic Part D • Number expected on services for condition • Eventual to increase with beneficiaries in cohorts elimination of aging population of managed care Part D "donut PLWHA • Limited/no clinical hole" outcome data or data on supportive services • May provide better information on drug coverage than other systems (with Part D enrollees) continued
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From page 190... ...
190 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-1 Continued Population How Design Covered Source of Data Number Representative North American AIDS Cohort Collaboration on Research and Design • Clinical • HIV-infected • Electronic • Approximately • Demographics cohorts adults at 60+ data 100,000 (including collect data clinical and provided by HIV-infected age, sex, and in the course academic contributing individuals transmission of routine research sites clinical and risk group) medical in the United interval are similar to practice at States and cohorts those reported each of the Canada • Clinical by the CDC contributing cohorts for the United clinical sites collect States, but • Classical data from with somewhat epidemio- electronic fewer logic HIV health minorities; interval records, includes cohorts interview individuals collect data question- from all but at visits naires, chart three U.S.
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From page 191... ...
191 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Represents about 20 • Data are private/ • No change percent of PLWHA proprietary, but anticipated in care may be available • New data elements upon submission can be added if they of proposal for are collected by research/policy use individual cohorts • No common protocol for timing and standardization of data elements across sites • Limited data on supportive services • PLWHA receiving care primarily in academic medical centers may show little change in already high standard of care in response to ACA or NHAS implementation continued
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From page 192... ...
192 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-1 Continued Population How Design Covered Source of Data Number Representative CFAR Network of Integrated Clinical Systems • Clinical • Individuals • Electronic • 23,197 HIV- • Representative cohorts receiving health infected adults of PLWHA in • Longitudinal HIV care at records the geographic record while 8 selected • Electronic regions of the in care in CFAR sites patient- selected CFAR a selected across the reported sites Center United outcomes Statesc for AIDS using Research standardized (CFAR) questionnaire • Chart review and other data collection systems HIV Research Network • Clinical • Adults, • Data • Approximately • Demographics cohorts children, and supplied 21,000 (including • Longitudinal adolescents electronically HIV-infected age, sex, race/ record while in care at and through patients in ethnicity, and in care at a hospital and medical care transmission participating community- record risk group)
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From page 193... ...
193 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Much of the data • Data are private/ • No change needed to calculate proprietary, but anticipated indicators, except may be available for supportive upon submission services of proposal for • New data elements, research/policy use such as housing • Population stability, can be not nationally added if they are representative of collected in the PLWHA in the clinical practice United States setting • Patient reported outcome questionnaire could be used to ask about basic needs, stigma, discrimination • Much of the data • Data are private/ needed to calculate proprietary, but indicators, except may be available for supportive upon submission of services proposal for research • New data elements, use such as housing stability, can be added if they are collected in the clinical practice setting continued
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From page 194... ...
194 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-1 Continued Population How Design Covered Source of Data Number Representative Clinical Case Registry: HIV (Department of Veterans Affairs) • Longitudinal • HIV- • Electronic • 23,463 • Population is record while diagnosed health HIV-infected predominantly in care in veterans records individuals male and older system receiving (2008)
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From page 195... ...
195 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Outcome and • Population • No change utilization data not nationally anticipated • Largest provider representative of of HIV care in the PLWHA in the United States United States • Only captures data within VHA system • No data on supportive services or mental health/ substance abuse screening continued
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From page 196... ...
196 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-1 Continued Population How Design Covered Source of Data Number Representative Kaiser Permanente • Longitudinal • HIV- • Electronic • >19,000 • Largest private record while diagnosed health HIV-infected provider of in care in individuals records individuals HIV care system enrolled in (2009)
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From page 197... ...
197 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Outcome and • Data are private/ • Possible utilization data proprietary increase in • Represents one of • Only captures data enrollees as the largest groups within Kaiser system more people of privately insured • No data on with low/ PLWHA in the supportive services moderate United States • Younger and incomes marginally employed (133–400% of individuals may not federal poverty remain in system due level) gain to insurance status access to private insurance • Possible increase in private insurance enrollees with elimination of preexisting condition clauses continued
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From page 198... ...
receive representative HIV care in of national IHS facilities (or native) population of PLWHA Bureau of Prisons Electronic Medical Record • Longitudinal • Federal • Electronic • 1,538 HIV- • Not record while prisoners health infected representative in care in diagnosed records individuals of national system with HIV/ (December 31, population of AIDS 2008)
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From page 199... ...
199 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Utilization and • Very small • No change outcome data subpopulation of anticipated • Optional HIV- PLWHA (even within specific module in native population) electronic health • Data from tribal record system facilities require • Important special permission to subpopulation access • Data on supportive services are not routinely captured • Developing • Very small • No change capability to subpopulation anticipated extract HIV data of PLWHA (even that currently are among incarcerated only available at population in the individual level United States)
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From page 200... ...
200 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-1 Continued Population How Design Covered Source of Data Number Representative Housing Opportunities for Persons with AIDS (Department of Housing and Urban Development) • HUD- • Aggregate • HOPWA • 60,669 • Generally mandated data on grantees: unduplicated representative reporting HOPWA information households of low-income for Housing benefi- on program (by end of PLWHA Oppor- ciaries and accomplish- FY2010)
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From page 201... ...
201 SOURCES OF DATA Potential ACA Strengths Limitations Enhancements Implications • Includes data on • Data are aggregated unmet need for • Supportive services housing among information limited HOPWA-eligible to HOPWA-funded households not services receiving HOPWA housing assistance • Includes data on supportive services, such as housing, food or nutrition, and transportation, as well as mental health and substance abuse services funded through HOPWA • Grantee data can be used to monitor changes at service system level
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From page 202... ...
Medical Monitoring Yes Yes Yes Yes Project Ryan White Services No Yes No Yes Report (at present RW provider agency) Ryan White ADAP No No No No Reports Medicaid Statistical No No No Yes Information System Medicare Chronic No No No Yes Condition Data Warehouse North American AIDS Yes, but Yes Yes Yes Cohort Collaboration on data are not Research and Design complete CFAR Network of Yes, but Yes Yes Yes Integrated Clinical data are not Systems complete
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From page 203... ...
required in all areas) Yes Yes Yes Yes Yes Yes (during surveillance period)
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From page 204... ...
care care visits HIV Research Network Yes Yes Yes Yes (> 60% of patients) Clinical Case Registry: Yes Yes Yes Yes HIV (VHA)
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From page 205... ...
205 SOURCES OF DATA Dates of Dates of CD4 viral load Viral load ART prescription/ Date of CD4 counts counts tests results dispensing dates death Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes (in IHS)
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From page 206... ...
Warehouse North American Yes 2012, will collect Yes AIDS Cohort visits, but not first Collaboration visit specifically on Research and Design CFAR Network of Yes Visits, but not first Yes Integrated Clinical visit specifically Systems HIV Research Yes Yes Yes Network (for a subset of (for a subset of (for a subset of sites) sites)
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From page 207... ...
Yes, also whether Whether received Whether received Whether received received HOPWA- HOPWA-funded HOPWA-funded HOPWA-funded funded services services services services
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From page 208... ...
reporting reporting period period Ryan White HIV/AIDS No No No No ADAP Reports status at end of reporting period Medicaid Yes Test dates Yes Yes Yes Statistical (screening) Information System Medicare No Test dates Yes Yes Yes Chronic (screening)
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From page 209... ...
Yes Yes Yes Yes No Yes Diagnosis (vaccination) captured if claim filed with appropriate ICD-9 codes Yes Yes Yes Yes No Yes No (vaccination)
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From page 210... ...
Indian Health Yes Yes Yes Yes Yes Service (IHS) Federal Bureau Yes Yes Yes Yes Yes of Prisons (if during (may not incarcera- be in EHR)
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From page 211... ...
211 SOURCES OF DATA Date of Diagnosis/ Date of hepatitis B Dates test results Date of pneumo- vaccination/ of ART ART for HIV influenza coccal date of resist- Date of prescription/ nephropathy, immuni- immuni- documented ance ART dispensing hepatitis B, zation zation immunity testing initiation dates TB No No No Yes Yes Yes, dates of Yes starting and stopping individual drugs Proposed Proposed Proposed Yes Yes Yes, dates of Yes for 2012 for 2012 for 2012 starting and stopping individual drugs For a For a For a For a Yes Yes For a subset of subset of subset of subset of subset of sites sites sites sites sites Yes Yes Yes Yes Yes Yes Yes (in VHA)
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From page 212... ...
HIV Research Network No Clinical Case Registry: HIV (VHA) Yes Kaiser Permanente Yes Indian Health Service Yes Federal Bureau of Prisons Yes (via ICD-9 codes)
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From page 213... ...
213 SOURCES OF DATA APPENDIX TABLE 3-2d follows on next page
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From page 214... ...
214 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-2d Data Elements for Additional Mental Health, Substance Abuse, and Supportive Services Indicators Date of Date of screening Dates of Dates Dates of mental for housing of food transportation health substance needs security needs screening abuse assessment assessment assessment National HIV No No No No No Surveillance System Medical Yes Yes Whether Whether Whether Monitoring received/ received/ received/ Project needed needed needed services, services, services, but not but not but not date date date Ryan White Whether Whether No No No Services Report screened screened within within 12-month 12-month reporting reporting period, period, but not but not date date Ryan White No No No No No ADAP Reports Medicaid Yes Yes No No No Statistical Information System Medicare No No No No No Chronic Condition Data Warehouse North American No No No No No AIDS Cohort Collaboration on Research and Design CFAR Network Yes Yes No No No of Integrated Clinical Systems HIV Research No No No No No Network
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From page 215... ...
215 SOURCES OF DATA APPENDIX TABLE 3-2d Continued Date of Date of screening Dates of Dates Dates of mental for housing of food transportation health substance needs security needs screening abuse assessment assessment assessment Clinical Case No No No No No Registry: HIV (VHA) Kaiser Yes Yes No No No Permanente Indian Health Yes Yes No No No Service Federal Bureau Yes Yes N/A N/A N/A of Prisons Housing No No Number of No No Opportunities HOPWAfor Persons with eligible AIDS (HOPWA)
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From page 216... ...
Medicaid Statistical Yes Yes Yes Information System Medicare Chronic Yes Yes Yes Condition Data Warehouse North American AIDS Yes Yes Yes Cohort Collaboration on Research and Design CFAR Network of Yes Yes Yes Integrated Clinical Systems HIV Research Network Yes Yes Yes Clinical Case Registry: HIV Yes Yes Yes (VHA) Kaiser Permanente Yes Yes Yes Indian Health Service Yes Yes Yes Federal Bureau of Prisons Yes Yes Yes (in separate database)
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From page 217... ...
(as of 2012) collected semiannually Yes Yes Yes No No (transgender persons who self-identify)
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From page 218... ...
Kaiser Permanente (KP) No No Yes Yes Indian Health Service No No No No Federal Bureau of Prisons No No No Yes (not as a discrete data element)
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From page 219... ...
219 SOURCES OF DATA Partner HIV Access to dental Employment Insurance status care Income status status/type Yes No No No Yes (only for persons (optional) reporting heterosexual risk)
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From page 220... ...
using CD4/VL areas) test dates Medical Yes Yes Yes Yes Monitoring Project Ryan White No No Yes Yes Services Report Ryan White No No No Yes ADAP Reports (most recent date)
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From page 221... ...
Yes Yes Yes Yes Yes (during surveillance period) Yes Yes Yes Possible: Yes (within depends on 12-month availability of reporting longitudinal period)
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From page 222... ...
on Research and Design CFAR Network Yes Yes (but date- Yes Yes of Integrated of-diagnosis Clinical data are not Systems complete) HIV Research Yes Yes Yes Yes Network Clinical Case Yes Yes Yes Yes Registry: HIV (diagnosed in (in VHA)
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From page 223... ...
223 SOURCES OF DATA Proportion in Proportion on Proportion continuous Proportion ART for 12 or who received 2 care for 12 or with a CD4+ more months or more viral more months cell count <500 who have an load tests in and with CD4+ who are not on undetectable All-cause cell count ≥350 past 12 months ART viral load (VL) mortality rate Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes (in IHS)
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From page 224... ...
Ryan White Services Report No No Ryan White ADAP Reports No No Medicaid Statistical No No Information System Medicare Chronic Condition Yes, if first visit covered by Yes, if first visit covered by Data Warehouse Medicare Medicare North American AIDS Possible, if a service date is No Cohort Collaboration on proximate to referral date Research and Design CFAR Network of Integrated Possible, if a service date is No Clinical Systems proximate to referral date HIV Research Network Yes Yes (for a subset of sites) (for a subset of sites)
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From page 225... ...
(incomplete data)
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From page 226... ...
Ryan White No No No No No ADAP Reports Medicaid Yes Yes Yes Yes Yes Statistical (but lacks (but lacks Information diagnosis diagnosis System date; TB date) test results)
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From page 227... ...
* surveillance period)
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From page 228... ...
(KP) Indian Health Yes Yes Yes Yes Yes Service (IHS)
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From page 229... ...
(date-ofdiagnosis data incomplete) Yes Yes Yes Yes No (for a subset (for a subset (for a subset (for a subset of sites)
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From page 230... ...
date) Ryan White Yes Yes No No No Services Report Ryan White No No No No No ADAP Reports Medicaid Yes Yes No No No Statistical Information System Medicare No No No No No Chronic Condition Data Warehouse North American No No No No No AIDS Cohort Collaboration on Research and Design CFAR Network Yes Yes No No No of Integrated Clinical Systems HIV Research No No No No No Network Clinical Case No No No No No Registry: HIV (VHA)
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From page 231... ...
231 SOURCES OF DATA APPENDIX TABLE 3-3d Continued Proportion Proportion screened Proportion screened for Proportion assessed Proportion for mental substance assessed for for need assessed for health use need for for food or need for disorders at disorders at housing at nutrition at transportation least once least once least once least once at least once in the past in the past in the past in the past in the past 12 12 months 12 months 12 months 12 months months Kaiser Yes Yes No No No Permanente Indian Health Yes Yes No No No Service Federal Bureau Yes Yes N/A N/A N/A of Prisons Housing No No Yes No No Opportunities for Persons with AIDS
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From page 232... ...
6. 2011 Medical Monitoring Project Response Cards Ryan White AIDS Drug 1.
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From page 233... ...
233 SOURCES OF DATA Link/s 1. http://health.utah.gov/epi/forms/Adult%20HIV.AIDS%20Report%20Form.pdf 1.
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From page 234... ...
Virgin Islands Viral Load Reportable Level Reportable Level Any Result Detectable Alaska, Arkansas, California, Colorado, Connecticut, Arizona, Idaho, Kansas, Delaware, Florida, Georgia, Hawaii, Illinois, Indiana, Kentucky, Montana, Iowa, Louisiana, Maine, Maryland, Massachusetts* , Nevada, North Carolina, Michigan, Minnesota, Mississippi, Missouri, Nebraska, Ohio, Pennsylvania, Rhode New Hampshire, New Jersey, New Mexico, New York, Island, Tennessee North Dakota, Oklahoma, Oregon, South Carolina, South Dakota, Texas, Utah, Vermont, Virginia, Washington, West Virginia, Wisconsin, Wyoming District of Columbia Guam, Puerto Rico U.S.
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From page 235... ...
Mariana Islands; Palau
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Key Terms
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