3


Sources of Data on HIV Care to
Assess Indicators of HIV Care and
Access to Supportive Services

In this chapter the committee describes data from public and private data systems to assess the indicators for HIV care and mental health, substance abuse, and supportive services identified in Chapter 2. The chapter identifies what the committee determined to be the best sources of data for assessing the indicators, discusses ways to maximize their usefulness, and recommends approaches for supplementing current data systems to gauge the impact of the National HIV/AIDS Strategy (NHAS) and the Patient Protection and Affordable Care Act (ACA) in improving HIV care (statement of task heading text and question 1). The chapter also describes other data collection and standardization efforts that could be utilized to monitor improvements in HIV care and how to regularly obtain data that capture the care experiences of people living with HIV/AIDS (PLWHA) without substantial new investments (statement of task questions 2 and 3). The chapter ends with the committee’s conclusions and recommendations.

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



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3 Sources of Data on HIV Care to Assess Indicators of HIV Care and Access to Supportive Services In this chapter the committee describes data from public and private data systems to assess the indicators for HIV care and mental health, sub- stance abuse, and supportive services identified in Chapter 2. The chapter identifies what the committee determined to be the best sources of data for assessing the indicators, discusses ways to maximize their usefulness, and recommends approaches for supplementing current data systems to gauge the impact of the National HIV/AIDS Strategy (NHAS) and the Patient Protection and Affordable Care Act (ACA) in improving HIV care (statement of task heading text and question 1). The chapter also describes other data collection and standardization efforts that could be utilized to monitor improvements in HIV care and how to regularly obtain data that capture the care experiences of people living with HIV/AIDS (PLWHA) without substantial new investments (statement of task questions 2 and 3). The chapter ends with the committee’s conclusions and recommendations. 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 pri- vate 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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128 MONITORING HIV CARE IN THE UNITED STATES and services provided to them. Box 3-1 summarizes the data systems and collection activities identified by the committee for further consideration. Requests for information were sent to individuals familiar with 29 of the data systems and agencies. Several other potential sources of data—ac- countable care organizations, the Enhanced Comprehensive HIV Preven- tion Planning (ECHPP) Project, and the 12 Cities Project—were still being implemented at the time of the inquiry.1 Information was obtained from 27 of the data systems or agencies contacted. The committee was unable to ob- tain information from Aetna and the HMO (Health Maintenance Organiza- tion) Research Network. The Substance Abuse and Mental Health Services Administration provided information on several data collection activities. In total, the committee reviewed information on 31 different data collec- tion activities. The committee requested background information (e.g., the population for which data are collected; the method and frequency of data collection; whether the data are public, private, or proprietary) and details about the data elements captured by each of the data systems in the areas of HIV testing and linkage to care, clinical care, access to care, treatment and adherence, financial security, demographics, risk behavior assessment, and patient experience with care. The data systems vary with respect to their design; the size, nature, and representativeness of population; the source and type of data; and the specific data elements included. The committee took account of these fac- tors 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 use- ful 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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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®], Wellpoint [HealthCore Inte- grated Research Database®]) • MarketScan Research Databases • HMO Research Network

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130 MONITORING HIV CARE IN THE UNITED STATES • Kaiser Permanente • National Vital Statistics System Two additional data systems provide useful information for track- ing the impact of the initiatives on HIV care for two small but important subpopulations of HIV-infected individuals (American Indians and Alaska Natives; 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 Appendix Table 3-1 provides an overview of the data systems, includ- ing their strengths and limitations, potential enhancements to consider, and implications of the ACA for each. 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 col- lective 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. Appendix Table 3-2f shows which data systems capture additional data elements that were identified by the committee to be of interest, but not required to estimate the indicators. Appendix Tables 3-3a through 3-3d summarize the indicators that can be estimated using information available from each of the data systems. Some of the data collection instru- ments are publicly available on the Internet (see Appendix Table 3-4); these provide more complete information on the data captured by the relevant data system. SOURCES OF HIV CARE DATA National HIV Surveillance System The Centers for Disease Control and Prevention (CDC) maintains the National HIV Surveillance System (NHSS), which provides data about the HIV/AIDS epidemic for program planning and resource allocation. Started in 1981, the surveillance system is conducted in all 50 states and the Dis- trict of Columbia, as well as American Samoa, Guam, Puerto Rico, the U.S. Virgin Islands, and the Northern Mariana Islands. In addition, the three freely associated states (the Federated States of Micronesia, the Republic of the Marshall Islands, and the Republic of Palau) report HIV surveillance

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131 SOURCES OF DATA data to CDC. CDC funds and assists state and local health departments to collect the information, and the state and local HIV surveillance systems represent valuable additional sources of data pertinent to HIV care.2 The NHSS is a population-based census of all persons diagnosed and reported with HIV infection in the United States, including both those individuals receiving HIV care and those who are not in care.3 Since April 2008, all 50 states and the District of Columbia, as well as American Samoa, Guam, the Northern Mariana Islands, Palau, Puerto Rico, and the U.S. Virgin Islands, have been using the same confidential name-based reporting standards for newly diagnosed cases of HIV. Al- though the NHSS only includes data from those confidential name-based reporting systems that have been collecting HIV data for at least 4 years in the national aggregate numbers it publishes (CDC, 2010),4 all states and areas report HIV surveillance data to CDC, and the data for each report- ing area are included in the annual HIV Surveillance Report. As such, the population in the surveillance system is one of the most nationally repre- sentative and provides the largest available sample of diagnosed PLWHA in the United States. Another advantage of the NHSS is the use of standardized definitions of variables and reporting methods. In terms of data elements of interest to the committee,5 the system includes date of HIV/AIDS diagnosis; infor- mation on CD4+ cell count and plasma HIV RNA (viral load) closest to diagnosis; and optional fields for HIV and substance abuse treatment refer- ral, pregnancy status, and antiretroviral therapy (ART) status at the time of reporting. Data gathered also can be used to monitor disparities with regard to race, ethnicity, sex, gender, age, geographic area, and country of birth. In addition, most jurisdictions report all CD4 count and viral load lab 2 State, territorial, and local HIV surveillance systems may include data from code-based reports initiated prior to name-based reporting and anonymous results that have not been name ascertained and hence are not included in the NHSS. The proportion of these uncounted cases can be calculated precisely by the reporting areas that have made the transition to name- based reporting. 3 The national surveillance system is meeting its completeness standard of ≥85 percent for all diagnosed cases being reported to the system (CDC response to IOM request for information, April 4, 2011). 4 The 2009 national aggregate data published in 2012 includes data from the 46 states and 5 dependent areas that had implemented confidential name-based reporting by January 2007 (CDC, 2012, Commentary). Two additional states will be represented in the national aggregate data reported next year. The HIV Surveillance Report for 2012, to be issued in 2014, will be the first to include aggregate data from all 50 states (CDC, 2010). 5 Although the data systems considered by the committee capture many useful data elements, only those data elements identified by the committee to be of specific interest for tracking the impact of the NHAS and ACA are discussed in the text. 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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132 MONITORING HIV CARE IN THE UNITED STATES results,6 which permits the tracking of individuals’ health status over time. In those cases, additional information can be extrapolated or calculated from available data. 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. One limitation of the NHSS, as noted in the NHAS (ONAP, 2010, p. 18), is the fact that although most jurisdictions report all lab results, such as CD4 and viral load results, not all do. Another limi- tation is the problem of incomplete or inaccurate reporting by clinicians treating PLWHA and by state and local health departments. Studies have raised questions about the accuracy and completeness of NHSS data. A study comparing self-reported dates of HIV diagnosis with those reported to the NHSS indicates that 56 percent of the date pairs agreed on the year of diagnosis, with another 17 percent differing by 1 year and 19 percent by 3 or more years (Hall et al., 2005). Thirty percent of self-reported dates were earlier than those reported in surveillance data (Hall et al., 2005). An- other study comparing date of first diagnosis based on self-report, medical record, and surveillance system data showed 51 percent agreement between self-reported year of diagnosis and the surveillance system and 70 percent agreement between the years reported in medical records and in surveillance (McCoy et al., 2010). Another 21 percent of self-reported dates differed by 1 year, while 23 percent differed by 3 or more years (McCoy et al., 2010). On average the self-reported dates were earlier than those recorded in the surveillance data (McCoy et al., 2010). According to one study of reporting completeness, 81 percent of HIV diagnoses are reported within 12 months of diagnosis (Hall et al., 2006). This figure corresponds with the observation of McCoy and colleagues that only 81 percent of the cases in their study could be matched to surveil- lance data (McCoy et al., 2010). Incomplete reporting may be explained by lack of timeliness in reporting, failure to comply with case reporting, or an assumption that previously diagnosed cases already had been reported (McCoy et al., 2010). Structures are in place to improve the accuracy and 6 As of June 15, 2010, 33 of 59 reporting areas (50 states, District of Columbia, 5 U.S. dependent areas, and 3 freely associated states) were reporting all CD4 and viral load test results (see Appendix Table 3-5), including 30 states, District of Columbia, Guam, and Puerto Rico (Personal communication, Amy Lansky, Centers for Disease Control and Prevention, October 6, 2011). One additional state (Kentucky) reported all CD4 results, but only detectable viral load results, and 7 additional states reported all viral load results, but not all CD4 results. More states are moving toward reporting all CD4 and viral load test results. Massachusetts, for example, mandated all CD4 and all HIV viral load results be electronically reported by clinical and commercial laboratories as of January 2012 (Massachusetts Department of Public Health, 2012).

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133 SOURCES OF DATA timeliness of reporting. For example, increased use of electronic laboratory reporting is expected to increase the completeness and timeliness of HIV surveillance reporting (Overhage et al., 2008). Despite current gaps in accuracy and reporting, the NHSS is one of the most representative HIV data systems that exists and offers a wealth of information. 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. The ongoing CD4 and viral load test dates avail- able for most reporting areas may be used as a surrogate for dates of first and ongoing visits for routine HIV care in those jurisdictions. These data permit estimation of the indicators for linkage to and continuity of care, regular CD4 and viral load testing, and individuals in care who achieve or maintain a CD4+ cell count of greater than 350 cells/mm3 (see Appendix Table 3-3a). A revised version of the Adult HIV Confidential Case Report was ap- proved by the Office of Management and Budget (OMB) in June 2011. The form includes a section that asks whether the individual “has ever taken any antiretrovirals (ARVs),” ARV medications taken, and dates ARVs were taken (date begun, date of last use). This information, which is collected “if required by Health Department,” is required for state and local health department that participate in CDC’s HIV Incidence Surveillance (HIS) and Variant, Atypical and Resistant HIV Surveillance (VARHS) activities and is optional for all other surveillance areas (CDC response to IOM request for information, October 20, 2011). When available, the ARV information may permit estimation of the core indicators pertaining to ART initiation and subsequent durable virologic suppression. However, there currently is no mechanism by which the NHSS can routinely capture ARV usage longitudinally. Longitudinal individual-level ART data in conjunction with longitudinal CD4 and viral load test dates and results would more reliably permit calculation of the relevant core indicators. Enhancement of NHSS data in this way would allow its use to evaluate all of the core HIV care indicators for the majority of the population diagnosed with HIV in the United States.7 Information is also captured on pregnancy status at the time the form is completed, which may be used to estimate the additional clinical 7 Sincethe NHSS captures date of death, it can provide the data necessary to calculate the core indicator pertaining to all cause mortality among PLWHA. However, as discussed in more detail later in this report, the National Vital Statistics System also collects and calculates annual data on HIV mortality.

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134 MONITORING HIV CARE IN THE UNITED STATES care indicator pertaining to proportion of pregnant women with HIV who are receiving ART. NHSS data also permit calculation of the core HIV care indicators for subpopulations of PLWHA based on age, race and ethnicity,8 sex assigned at birth, current gender identity, geographic distribution, and country of birth. Although CDC does not currently capture information specifically about individuals’ sexual orientation, which relates to the NHAS target and associated indicator pertaining to the proportion of diagnosed gay or bisexual men with undetectable viral load, combining data on sex assigned at birth with data collected on sex of sexual partner(s) (sex with male) can serve as a close proxy. As is common with disease surveillance in the United States, the HIV surveillance system also does not collect information about income level. Unlike the previous version of the Adult HIV Confidential Case Report form, which included an optional section asking about the individual’s primary source of reimbursement for medical treatment (Medicaid, private insurance or HMO, no coverage, other public funding, clinical trial or government program, unknown), the current form does not collect that information. 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 dis- cussed 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. Use of national surveillance system data would permit evaluation of the indicators for the vast majority of the population diagnosed with HIV in the United States, as well as for subpopulations based on race, ethnicity, sex, gender, age, and country of origin. In addition, capturing information on sexual orientation and maintaining current geographic areas of residence for HIV-infected individuals in the system would further enhance the ability of the NHSS to be used to evaluate the impact of the NHAS and health care reform on HIV care in the United States. 8 Like the other federal data systems, NHSS captures data on race and ethnicity as specified by OMB (1977, 1997a,b).

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135 SOURCES OF DATA Medical Monitoring Project Initiated in 2005 in response to an Institute of Medicine (IOM, 2004) report, the Medical Monitoring Project (MMP) is a CDC-sponsored popu- lation-based surveillance system designed to collect comprehensive clinical and behavioral service need, utilization, and outcomes data on a nationally representative sample of adults (≥18 years of age) living with HIV/AIDS who are receiving medical care from outpatient facilities in the United States and Puerto Rico (Blair et al., 2011). MMP is the first project since the HIV Cost and Services Utilization Study (Bozzette et al., 1998) almost 15 years ago that is designed to obtain comprehensive information about HIV care from a nationally representative population of PLWHA who are receiving care. MMP employs a probability proportional to size sampling design to obtain cross-sectional probability samples of its target population. A sample of about 400 individuals from each of 26 project areas (approxi- mately 10,400 people) was selected each year for the 2007 and 2008 data collection cycles.9 Data are obtained from individual patient interviews and medical record review. 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. In terms of demographic data, the interview component of MMP captures self-reported data on race, ethnicity, sex at birth, gender identity (male, female, transgender), and sexual orientation (homosexual, heterosexual, bisexual). In addition to the comprehensive- ness of the data currently captured, the nature of the interview component of MMP allows flexibility to modify the questionnaire to capture different data elements that are subsequently determined to be useful. Starting with the 2011 cycle, for example, MMP is capturing data on stigma and dis- crimination, making it the only data system to do so among those examined by the committee. An additional strength of MMP is its design to generate results that are nationally representative of the population of HIV-infected adults in care in the United States, which makes it a potentially valuable tool for track- ing changes in access to and quality of HIV care in the country. Although MMP only includes HIV-infected individuals who are in care, the sample is not limited to those receiving care through a specific payer (Medicaid, Medicare, Veterans Health Administration [VHA], private or HMO) as is the case with a number of other data systems. Despite its strengths, MMP also has several limitations. One significant 9 Details of the sampling method are described in the MMP 2009 protocol (CDC, 2009) and summarized in Blair et al. (2011) and on the MMP website (CDC, 2011b).

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136 MONITORING HIV CARE IN THE UNITED STATES concern about MMP is its low participation rate. For the 2007 data col- lection cycle, 10,192 individuals were determined to be eligible for partici- pation. The median participation rate was 40 percent, ranging from 3 to 76 percent depending on the project area. Interview data ultimately were reported for 3,643 of the 3,944 participants interviewed; medical record abstraction data were not reported (Blair et al., 2011). As a result of the low participation rate, the data for the 2007 collection cycle may not be nationally or locally representative of HIV-infected adults receiving care in the United States. Steps have been taken to improve participation rates beginning with the 2009 collection cycle, and CDC anticipates that future data will permit nationally representative results (Blair et al., 2011).10 It is not clear, however, that the efforts will completely resolve the issues of nonresponse bias. For example, studies have found that PLWHA who are harder to reach and/or engage for study participation are more likely to be homeless or unstably housed; to be struggling with mental health or drug use problems; to be socially isolated; and to have high rates of missed ap- pointments. Specific efforts to engage such populations are needed to ensure their representation in the study. A second concern about MMP is the potential for social desirability response bias in the responses to the interview questions. Since many of the the interviews are conducted “in person,” respondents may be reluctant to answer accurately if doing so means providing what they perceive to be less “socially appropriate” responses to sensitive questions (Blair et al., 2011). Providing participants with a means to enter their responses to sensitive questions directly into the computer or on the response form is one way to help counteract social desirability response bias. This approach would avoid the necessity of sharing their responses with the interviewer and could improve the accuracy of the information collected (Carr et al., 1983; Greist et al., 1973; Kobak et al., 1996; Lawrence et al., 2010; Lucas et al., 1977; Metzger et al., 2000; Petrie and Abell, 1994; Waruru et al., 2005; Willig, 2011), although a study of clients at an addiction treatment center found no significant differences in the reliability of information on drug, alcohol, or tobacco use collected through computerized interviews, face-to-face in- terviews, or self-report formats (Skinner and Allen, 1983). A third concern is the potential inaccuracy of clinical data (lab values, vaccinations, ART prescription) collected through participant self-report (Blair et al., 2011). Although a problem for reports of findings based on clinical information obtained solely from interviews (e.g., Blair et al. 2011), medical record abstraction is another component of MMP (CDC, 2009, pp. 22-25), which permits comparison with and corroboration of 10 Some interview and medical record abstraction data from MMP’s 2009-2010 cycle have been reported (CDC, 2011d).

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137 SOURCES OF DATA the self-reported clinical data. It is important that data from the medical record abstraction component of the protocol be available to permit such cross-checking and confirmation of self-reported information. The 2009 MMP protocol specifies that in project areas that have the surveillance authority to abstract medical records of selected patients without their consent, medical record abstraction should be completed for all sampled patients, including those who decline to participate in the interview or who cannot be located for interview (CDC, 2009, p. 25). In project areas with a more narrow definition of surveillance, where record abstraction cannot be completed without patient consent, minimal data can be collected on all sampled patients. The minimum data set contains the same fields as the NHSS case report form, and therefore these data can be collected in all project areas under HIV/AIDS surveillance authority. Despite its current limitations, the research infrastructure, design, and implementation efforts that are in place make MMP a promising tool for monitoring care among HIV-infected adults receiving care in the United States. The committee supports the current efforts of CDC to improve individual participation and completion rates. Other strategies to increase participation might include providing additional incentives for study participants11 and participating clinics or reducing the time required to complete the full interview by selectively eliminating certain questions.12 In addition, implementation of the “minimum data set” re- cords abstraction could help to provide some data for individuals who decline to participate. Beginning with the 2012 data collection cycle, medical record abstrac- tion will focus only on the 12 months preceding the interview; earlier clini- cal data will no longer be captured (Personal communication, Amy Lansky, Centers for Disease Control and Prevention, October 20, 2011). 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. For example, data on hepatitis B screening, vaccination, and immunity would not be captured if the relevant testing and immunization took place more than 12 months prior. Another option for reducing the number of questions in the standard interview without undermining the breadth of information provided might be to eliminate (some of) the self-reported clinical data if the same infor- 11 The 2009 MMP protocol specifies that individual participants will receive approximately $40 in cash or cash equivalent for participating in the interview (CDC, 2009, p. 21). 12 Currently the MMP protocol offers two interview instruments: the Standard Question- naire, which is the default and takes approximately 45 minutes to complete, and the Short Questionnaire, which is reserved for individuals who speak neither English nor Spanish or are too sick to respond to the Standard Questionnaire and takes approximately 20 minutes to complete.

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226 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-3c Data Systems Mapped to Additional Clinical HIV Care Indicators Proportion Proportion screened for Proportion screened TB since screened for for Proportion diagnosis chlamydia, hepatitis screened Proportion and results gonorrhea, B since for immunized interpreted and syphilis diagnosis hepatitis C for influenza National HIV No No No No No Surveillance System Medical Yes Yes Yes Yes Yes Monitoring (2007– (2007– Project 2011 cycles 2011 cycles only)* only)* Ryan White Yes Syphilis Yes Yes No Services Report (but lacks within (within (within diagnosis 12-month 12-month 12-month date) reporting reporting reporting period period) period) 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) Medicare Yes Yes Yes Yes Yes Chronic (but lacks (but lacks Condition Data diagnosis diagnosis Warehouse date; TB date) test results) *Starting with the 2012 data collection cycle, medical record abstraction will focus on the 12 months preceding the interview. Earlier clinical data will no longer be captured.

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227 SOURCES OF DATA Proportion with Proportion Proportion HIV-associated immunized who receive nephropathy, for drug hepatitis B Proportion pneumococcal Proportion resistance (when treatment HIV-infected pneumonia immunized for testing prior is indicated) or pregnant women since hepatitis B (if to ART active TB who who are not on diagnosis needed) initiation are not on ART ART No No No No Yes (when pregnancy and ART status captured) Yes Yes Yes Yes Yes (during (2007–2011 (during surveillance cycles only)* surveillance period) period) No Whether No No Yes vaccination series (ART prescribed is completed in last 12 months) No No No No Data only for fully ADAP- funded drugs Yes Yes Yes Yes Yes (but lacks (if covered (if claims filed (if pregnancy diagnosis and with proper captured date) identifiable diagnosis code/s) by relevant by code; diagnostic lacks ART code/s) initiation date) Yes Yes Yes No No (but lacks (but lacks diagnosis ART date) initiation date) continued

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228 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-3c Continued Proportion Proportion screened for Proportion screened TB since screened for for Proportion diagnosis chlamydia, hepatitis screened Proportion and results gonorrhea, B since for immunized interpreted and syphilis diagnosis hepatitis C for influenza North Yes No Yes Yes No American (date-of- AIDS Cohort diagnosis Collaboration data on Research incomplete) and Design CFAR Network Yes Yes Yes Yes Proposed of Integrated (date-of- for 2012 Clinical diagnosis Systems data incomplete) HIV Research Yes Yes Yes Yes Yes Network (for a subset (for a subset of sites) of sites) Clinical Case Yes Yes Yes Yes Yes Registry: HIV (in VHA) (VHA) Kaiser Yes Yes Yes Yes Yes Permanente (at KP) (KP) Indian Health Yes Yes Yes Yes Yes Service (IHS) (in IHS) Federal Bureau Yes Yes Yes Yes Yes of Prisons (although data may not be available in EHR) Housing No No No No No Opportunities for Persons with AIDS

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229 SOURCES OF DATA Proportion with Proportion Proportion HIV-associated immunized who receive nephropathy, for drug hepatitis B Proportion pneumococcal Proportion resistance (when treatment HIV-infected pneumonia immunized for testing prior is indicated) or pregnant women since hepatitis B (if to ART active TB who who are not on diagnosis needed) initiation are not on ART ART No No Yes Yes Yes (as of 2012) Proposed for Proposed for Yes Yes Yes 2012 2012 (as of 2012) (date-of- diagnosis data incomplete) Yes Yes Yes Yes No (for a subset (for a subset (for a subset (for a subset of sites) of sites) of sites) of sites) Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes (may not be (would available) require record abstraction and verification) No No No No No

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230 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-3d Data Systems Mapped to Additional Mental Health, Substance Abuse, and Supportive Services Indicators 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 National HIV No No No No No Surveillance System Medical Yes Yes No No No Monitoring (whether (whether (whether Project received/ received/ received/ needed needed needed services, services, services, but not but not but not date) date) 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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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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232 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-4 Publicly Available Data Collection Instruments and Information Data System Collection Instrument/s National HIV Surveillance 1. Adult HIV/AIDS Confidential Case Report System Medical Monitoring Project 1. 2010 Medical History Form* 2. 2010 Surveillance Period Inpatient Form* 3. 2010 Surveillance Period Summary Form* 4. 2010 Surveillance Period Visit Form* 5. 2010 Standard Questionnaire* 6. 2011 Medical Monitoring Project Response Cards Ryan White AIDS Drug 1. AIDS Drug Assistance Program (ADAP) Data Assistance Program (ADAP) Report—Final Client-Level Data Variables (Effective Reports October 1, 2012) 2. ADAP Data Report: Grantee Report: Summary of Changes to the Grantee-Level Variables 3. ADAP—Quarterly Data Report (Phasing out this year) Ryan White Services Report 1. Data Elements for Client-Level Data Export (Effective for the 2010 Annual RSR) Medicaid Statistical Information 1. Medicaid Analytic eXtract Files (MAX) User Guide System 2. Medicaid and CHIP Statistical Information System (MSIS): File Specifications and Data Dictionary Medicare Chronic Condition 1. Chronic Condition Data Warehouse User Guide Data Warehouse 2. Summary Statistics 3. Data Dictionaries 4. Chronic Conditions 5. Analytic Guidance CFAR Network of Integrated 1. CNICS Data Elements Clinical Systems Indian Health Service 1. HIS Clinical Reporting System (BGP): Selected Measures (Local) Report Performance Measure List and Definitions Federal Bureau of Prisons 1. Management of HIV: Federal Bureau of Prisons Clinical Practice Guidelines—May 2011 Housing Opportunities for 1. Annual Progress Report (APR): Measuring Persons with AIDS Performance Outcomes 2. Consolidated Annual Performance Evaluation Report (CAPER): Measuring Performance Outcomes 3. Homeless Management Information System (HMIS) Data Standards, Revised Notice—March 2010 *Link to 2009 version of MMP data collection materials.

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233 SOURCES OF DATA Link/s 1. http://health.utah.gov/epi/forms/Adult%20HIV.AIDS%20Report%20Form.pdf 1. http://www.cdc.gov/hiv/topics/treatment/MMP/pdf/MMP_2009_MRA_MHF_v400_ OMB_Race_Jan5_2009.pdf 2. http://www.cdc.gov/hiv/topics/treatment/MMP/pdf/MMP_2009_MRA_SPIF_v400_ Jan5_2009.pdf 3. http://www.cdc.gov/hiv/topics/treatment/MMP/pdf/MMP_2009_MRA_SPSF_v400_ Jan5_2009.pdf 4. http://www.cdc.gov/hiv/topics/treatment/MMP/pdf/MMP_2009_MRA_SPVF_v400_ Jan5_2009.pdf 5. http://www.cdc.gov/hiv/topics/treatment/MMP/pdf/2009MMPStandardEnglish.pdf 6. http://www.cdc.gov/hiv/topics/treatment/mmp/pdf/2011_english_response_cards.pdf 1. http://hab.hrsa.gov/manageyourgrant/files/habadrclientlevelvariables.pdf 2. http://hab.hrsa.gov/manageyourgrant/files/adrgranteeleveldatavariablesfinal.pdf 3. http://hab.hrsa.gov/manageyourgrant/adap/adapformfeb08.pdf 1. http://hab.hrsa.gov/manageyourgrant/files/clientleveldatafields.pdf 1. http://www.ccwdata.org/cs/groups/public/documents/document/ccw_max_user_guide.pdf 2. https://www.cms.gov/msis/downloads/msisdd2010.pdf 1. http://www.ccwdata.org/cs/groups/public/documents/document/ccw_userguide.pdf 2. http://www.ccwdata.org/summary-statistics/index.htm 3. http://www.ccwdata.org/data-dictionaries/index.htm 4. http://www.ccwdata.org/chronic-conditions/index.htm 5. http://www.ccwdata.org/analytic-guidance/index.htm 1. http://www.uab.edu/cnics/data-core/cnics-data-elements 1. http://www.ihs.gov/cio/crs/documents/crsv11/SelectedMeasuresV11_1.pdf 1. http://www.bop.gov/news/PDFs/mgmt_hiv.pdf 1. http://www.hudhre.info/documents/APR_HOPWA.docx 2. http://portal.hud.gov/hudportal/documents/huddoc?id=hopwa_caper_10312014.doc 3. http://www.hudhre.info/documents/FinalHMISDataStandards_March2010.pdf

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234 MONITORING HIV CARE IN THE UNITED STATES APPENDIX TABLE 3-5 CD4 and Viral Load Reporting by HIV Surveillance Reporting Area (as of June 15, 2010) CD4 count (cells/µL) Reportable Level Reportable Level All Values <200 Alaska, Arkansas, California, Delaware, Florida, Alabama, Arizona, Georgia, Hawaii, Illinois, Indiana, Iowa, Kentucky, Connecticut, Idaho, New Louisiana, Maine, Maryland, Massachusetts,* Michigan, Jersey, New Mexico, Minnesota, Mississippi, Missouri, Nebraska, New North Carolina, Ohio, Hampshire, New York, North Dakota, Oregon, Pennsylvania, Rhode South Carolina, South Dakota, Texas, Utah, Virginia, Island, Tennessee, Washington, West Virginia, Wyoming Vermont, Wisconsin District of Columbia Guam, Puerto Rico U.S. 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. Virgin Islands *As of January 2012. SOURCES: Personal Communication, Amy Lansky, Centers for Disease Control and Prevention, October 6, 2011; Massachusetts Department of Public Health, 2012.

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235 SOURCES OF DATA Reportable Level <500 No Reporting Colorado, Kansas, Nevada, Oklahoma Montana American Samoa; Marshall Islands; Micronesia, FS; N. Mariana Islands; Palau No Reporting Alabama American Samoa; Marshall Islands; Micronesia, FS; N. Mariana Islands; Palau

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