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4 Barriers to the Collection of HIV Care Data This chapter addresses question 4 from the committee’s statement of task on barriers to the collection of data to measure core indicators for clinical HIV care and for mental health, substance use, and supportive services. The committee was specifically asked to describe policy, reimburse- ment, and reporting issues that need to be addressed to collect necessary data (statement of task question 4a). Because the reimbursement and re- porting barriers to the collection of data are sometimes linked to policies, the chapter begins with a discussion of those barriers and then describes other policy barriers to the collection of data. The chapter addresses how data can be collected in a way that will not significantly increase burden (statement of task question 4b) within the section on reporting barriers. The chapter ends with the committee’s conclusions and recommendation pertaining to this portion of its charge. POTENTIAL REIMBURSEMENT-RELATED BARRIERS TO THE COLLECTION OF HIV CARE DATA Reimbursement-related barriers to the collection of data on care and supportive services received by people living with HIV/AIDS (PLWHA) are to a large extent specific to claims data, as providers enter services rendered into claims systems in order to receive reimbursement for those services. As described in Chapter 2, there are several advantages to the use of claims data for health care research. For example, claims data represent a large quantity of data, can be made anonymous and used without patient authorization, and are available in an electronic format for easier transmis- 237

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238 MONITORING HIV CARE IN THE UNITED STATES sion. Claims data are an especially important source of information on care received by PLWHA given the large number who are Medicaid beneficia- ries: an estimated 47 percent of PLWHA who were receiving regular medi- cal care were Medicaid beneficiaries in FY 2007 (Kates, 2011). As more PLWHA become eligible for Medicaid and commercial health insurance as a result of the Patient Protection and Affordable Care Act (ACA, P.L. 111- 148), claims data are likely to become an even more useful source of data for monitoring HIV care. Despite the many advantages of claims data, the influence of reimbursement policies needs to be taken into consideration when using claims data for health services research (Crystal et al., 2007). Health plan reimbursement policies may “carve out” certain services such as behavioral health, transportation, dental, and pharmacy benefits so that a separate organization is responsible for payment. As a result, the primary insurer may not have a record of the carved-out service in its claims data (Hicks, 2003; Joins et al., 2007). Carve-out arrangements are often used in the Medicaid program when Medicaid managed care organi- zations (MCOs) contract with other entities to provide services to which beneficiaries are entitled, as per the state Medicaid agencies’ contract with the MCO.1 An MCO may decide to carve out a benefit because it lacks in-house expertise to meet a particular patient need or because it does not have the infrastructure necessary to administer a benefit (e.g., transporta- tion services) (Joins et al., 2007). Carve-out arrangements parse benefits out to multiple entities, and it is often challenging for these entities to commu- nicate and exchange data with one another in order to coordinate patient care effectively (Joins et al., 2007).2 Carve-outs may also make it difficult to combine data at the patient level for research or monitoring purposes. Carve-out arrangements may pose a challenge to the estimation of indica- tors that require prescription drug dispensing data, or data on receipt of mental health or transportation services, since these services are among those that are most likely to be carved out of a health plan. A health plan’s claims data also will not contain data on care for which 1 In FY 2007, 71 percent of Medicaid enrollees with HIV had some of their care paid for through Medicaid managed care (Kates, 2011). 2 The Lewin Group performed an assessment of carve-out and carve-in arrangements for pharmacy benefits within Medicaid MCOs (Joines et al., 2007). Among the advantages to MCOs with carve-in arrangements were that providers were more likely to have real-time access to pharmaceutical data to help prevent potential drug interactions and polypharmacy (unwanted duplication of drugs), identify inappropriate use of drugs, monitor controlled substance usage, and other interventions. Some representatives of carve-out MCOs reported that they do not always have access to real-time claims data to determine what medications patients are taking. The report noted the importance of data system integration to ensure real- time transfer of pharmaceutical information, both for MCOs that carve their pharmaceutical services out to other entities and for carve-in MCOs who may contract with a pharmacy benefits management group to manage pharmacy benefits (Joines et al., 2007).

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239 BARRIERS TO THE COLLECTION OF HIV CARE DATA a patient pays out of pocket or for which a claim is submitted before a deductible is exceeded (Hicks, 2003). In other cases, services may not be documented because they are provided by nonphysicians or by contract practitioners and providers who cannot be reimbursed for the service. Some state Medicaid agencies limit the types of providers and practitioners that can bill and receive reimbursement, for example (Bachman et al., 2006). Furthermore, some states limit the number of services that can be billed to Medicaid on the same day (e.g., state Medicaid restrictions on same-day billing for a physical health and a mental health service or visit), which may result in inaccurate or incomplete documentation (Kautz et al., 2008). Another general source of inaccuracy in claims data that is tied to re- imbursement is inappropriate or incomplete coding. Providers may not use all applicable codes as a way to reduce administrative burden,3 exaggerate condition severity by entering alternate coding as a way to ensure payment, or enter alternate diagnoses for sensitive conditions such as mental illness or HIV in order to protect patients’ confidentiality and insurability (Hicks, 2003). As will be discussed in greater detail in Chapter 5, effective use of health information technology (health IT) can make for easier collection and exchange of care delivery data. To reap its full benefits, health IT will have to be adopted across insurers and a growing number of providers. However, a number of surveys show that adoption of electronic health re- cords (EHRs) and other health IT products is occurring slowly in settings where PLWHA receive care.4 The cost to implement and maintain health IT systems is a frequently cited barrier to adoption (Lardiere, 2009; Rao et al., 2011; Reardon and Davidson, 2007). A 2011 study estimated the cost of implementation of an EHR into a physician practice to be $162,000 during the first year (Fleming et al., 2011). The Health Information Technology for Economic and Clinical Health (HITECH) Act, a component of the American Recovery and Reinvestment Act of 2009 (ARRA, P.L. 111-5), helps to reimburse providers for some of the costs for implementation of EHRs by authorizing incentive pay- ments through Medicare and Medicaid to health care professionals and 3 Surveys of physicians show that there is substantial administrative burden associated with reimbursement processes under Medicaid and Medicare (AMA, 2010; Cunningham and O’Malley, 2009). This administrative burden includes payment delays, rejection of claims because a billing form was completed incorrectly or the physician was not able to verify a patient’s eligiblity, and complex rules and regulations on how claims are to be filed (Cunningham and O’Malley, 2009). 4 An electronic health record (EHR) is an electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be created, managed, and consulted by authorized clinicians and staff across more than one health care organization (HHS, 2008).

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240 MONITORING HIV CARE IN THE UNITED STATES hospitals that implement certified EHRs and demonstrate certain usage requirements.5 This support is likely to increase EHR usage by HIV care providers owing to the large number of PLWHA who have Medicare and/ or Medicaid coverage. A continuing obstacle to EHR adoption may be the inability of some providers to cover the upfront costs of implementation, however, since providers are reimbursed after demonstrating usage require- ments. Some have argued that under current provider reimbursement mod- els, the larger share of the monetary benefit from health IT goes to health care payers (e.g., insurers) and that often the users of health IT (e.g., HIV care providers) do not experience much in the way of financial benefit (e.g., Johnston et al., 2003; PCAST, 2010; Sittig and Singh, 2011). This could be a barrier to implementation or continued use of EHRs. In addition, ques- tions remain about the role of commercial health insurers, who are major payers in many care settings, in funding health IT implementation (Sittig and Singh, 2011). Although most HIV care is financed through public programs, the number of PLWHA who are eligible for commercial health insurance is likely to grow under the ACA. POTENTIAL REPORTING-RELATED BARRIERS TO THE COLLECTION OF HIV CARE DATA The ability to monitor trends in HIV care depends on accurate and timely reporting of data by HIV care providers, laboratories, health de- partments, and other entities. For example, estimation of several of the committee’s recommended indicators for clinical HIV care require accurate estimates of the number of people living with diagnosed HIV infection in the United States, as well as CD4 and viral load testing information, reported for state and local as well as national HIV/AIDS surveillance purposes. As of April 2008, all 50 states, the District of Columbia, and 6 depen- dent areas had implemented confidential name-based HIV case reporting (in addition to AIDS case reporting), where the names of individuals who test positive for HIV are reported to state or local public health authorities (CDC, 2010) (Table 4-1). Some research has shown underreporting of HIV/ AIDS cases by health care providers and laboratories to public health au- thorities (Hall et al., 2006). Past studies conducted in different geographic 5 Under a Medicare EHR incentive program, eligible health professionals can receive as much as $44,000 over a 5-year period. Incentive payments for hospitals and critical access hospitals (CAHs) are based on a number of factors and begin with a $2-million base payment. Under a Medicaid EHR incentive program, eligible health professionals can receive up to $63,750 over 6 years. As under the Medicare program, incentive payments for hospitals and CAHs under the Medicaid program are based on a number of factors and begin with a $2-million base payment (CMS, 2012).

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241 BARRIERS TO THE COLLECTION OF HIV CARE DATA areas and years show a range of AIDS case reporting completeness of 60 to 98 percent (Buehler et al., 1992; Doyle et al., 2002; Greenberg et al., 1993, Jara et al., 2000; Rosenblum et al., 1992; Schwarcz et al., 1999). These studies were limited in that they assessed completeness of reporting for a specific geographic area or for an isolated time period (Hall et al., 2006). Attempting to address the weaknesses of previous studies, Hall and colleagues (2006) used capture-recapture methods to assess the complete- ness of HIV and AIDS case data reported to surveillance programs during October 1, 2002 to September 30, 2003. Over the 1-year period, 11,266 HIV diagnoses were reported to surveillance programs in four states and two cities. The estimated completeness of reporting of HIV diagnoses was 76 percent when allowing 6 months of reporting delay and increased to 81 percent with 12 months of follow up. The estimated completeness of AIDS diagnoses reported to seven states and two cities (11,079 AIDS diagnoses were reported) was 77 percent when allowing 6 months of a reporting de- lay (Hall et al., 2006). Based on this research, in part, the CDC estimates the completeness of reporting of HIV infection to be more than 80 percent (CDC, 2010). Barriers to the reporting of notifiable diseases, including HIV/AIDS, may include lack of awareness of reporting requirements and procedures on the part of providers, human error, lack of motivation, and poor system processes (Lazarus et al., 2009; Overhage et al., 2008; Turnberg et al., 2010). Evidence suggests that automated electronic reporting facilitates more accurate and complete reporting of notifiable diseases to public health authorities. For example, Overhage and colleagues (2008) found that use of an automated electronic laboratory reporting (ELR) system to report notifi- able conditions to health departments serving Indianapolis, Indiana, identi- fied 4.4 times as many cases of such conditions as traditional, spontaneous, paper-based methods, likely by helping to overcome some of the barriers noted above. The ELR system also identified cases about 8 days earlier than spontaneous reporting (Overhage et al., 2008). Despite substantial progress in the implementation of electronic reporting, some reporting mechanisms still depend on practitioner-initiated manual data entry and submission, which are more likely to result in delayed and inaccurate data (Lazarus et al., 2009). State and local HIV/AIDS surveillance systems collect additional labo- ratory information on established, reported cases of HIV/AIDS, such as CD4 and viral load counts. These data are used for surveillance purposes, such as to verify existing cases of HIV/AIDS, to identify potential new cases, and to evaluate unmet medical need (CSTE, 2009). HIV diagnostic CD4 count and HIV viral load test results are reportable from clinical, hospital, laboratory, or other authorities in all but a few U.S. states and territories (CSTE, 2011). However, as is discussed in Chapter 3, states currently vary

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242 TABLE 4-1 HIV Testing and Reporting Policies State or HIV Name Reporting State or HIV Name Reporting Territory C/A Reporting Implementation Territory C/A Reporting Implementation Alabama C Name 1988 Jan New Hampshire C, A Name 2005 Jan Alaska C, A Name 1999 Feb New Jersey C, A Name 1992 Jan Arizona C, A Name 1987 Jan New Mexico C, A Name 1998 Jan Arkansas C, A Name 1989 Jul New York C, A Name 2000 Jun California C, A, Name 2006 Apr North Carolina C Name 1990 Feb Colorado C, A Name 1985 Nov North Dakota C Name 1988 Jan Connecticut C, A Name 2005 Jan Ohio C, A Name 1990 Jun Delaware C, A, Name 2006 Feb Oklahoma C, A Name 1988 Jun District of C, A Name 2006 Nov Oregon C, A Name 2006 Apr Columbia Florida C, A Name 1997 Jul Pennsylvania C, A Name 2002 Oct Georgia C, A Name 2003 Dec Rhode Island C, A Name 2006 Jul Hawaii C, A Name 2008 Mar South Carolina C Name 1986 Feb Idaho C Name 1986 Jun South Dakota C Name 1988 Jan Illinois C, A Name 2006 Jan Tennessee C Name 1992 Jan Indiana C, A Name 1988 Jul Texas C, A Name 1999 Jan

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Iowa C Name 1998 Jul Utah C, A Name 1989 Apr Kansas C, A Name 1999 Jul Vermont C, A Name 2008 Apr Kentucky C, A Name 2004 Oct Virginia C, A Name 1989 Jul Louisiana C, A Name 1993 Feb Washington C, A Name 2006 Mar Maine C, A Name 2006 Jan West Virginia C, A Name 1989 Jan Maryland C, A Name 2007 Apr Wisconsin C, A Name 1985 Nov Massachusetts C, A Name 2007 Jan Wyoming C, A Name 1989 Jun Michigan C, A Name 1992 Apr American Samoa C, A Name 2001 Aug Minnesota C, A Name 1985 Oct Guam C, A Name 2000 Mar Mississippi C Name 1988 Aug North Mariana Islands C, A Name 2001 Oct Missouri C, A Name 1987 Oct Palau C Name 2005 Oct Montana C, A Name 2006 Sept Puerto Rico C, A Name 2003 Jan Nebraska C, A Name 1995 Sept U.S. Virgin Islands C Name 1998 Dec Nevada C Name 1992 Feb NOTE: A = anonymous; C = confidential. SOURCE: Adapted from KFF, 2011. 243

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244 MONITORING HIV CARE IN THE UNITED STATES with respect to the level at which viral load and CD4 test results are report- able. In several states, CD4 cell counts of less than 500 or 200 cells/mm3 are reportable, whereas in other states all CD4 values are reportable. In addi- tion, some states do not report undetectable viral load results (see Chapter 3, Appendix Table 3-5) (Personal communication, Amy Lansky, Centers for Disease Control and Prevention, October 6, 2011). The variability in the legislation and regulations for reporting may result in differences in the completeness of data and make it difficult to compare these measures across states and territories. The committee recommends (see Recommendation 3-2 in Chapter 3) that CDC take steps to enhance HIV/AIDS surveillance by issuing guidelines or criteria for National HIV Surveillance System report- ing to include all CD4 and viral load test results. Non-reporting of HIV/AIDS cases identified at anonymous testing sites may be another barrier to the completeness of surveillance data. Health departments introduced anonymous HIV testing early in the HIV epidemic because of the unique stigma attached to HIV and concern that fear of potential breaches in confidentiality might deter individuals from testing (Markovitz et al., 2011). Unlike confidential HIV testing where an indi- vidual’s name is recorded with her or his test result, in anonymous HIV testing a number or code is linked to the test, and only the individual being tested knows the code. Individuals who test positive for HIV at anonymous testing sites are not reported to state or local health departments unless they choose to have their test results converted from anonymous to confiden- tial (CDC, 2011b). Anonymous testing is an important service. Research has shown that it contributes to earlier testing as well as medical care (as defined by the average number of days in HIV-related medical care before an AIDS diagnosis) (Bindman et al., 1998). A recent study of public testing sites in Colorado and Washington state showed that anonymous testers were significantly more likely to have CD4+ cell counts >500 cells/mm3, suggesting an earlier stage of HIV infection. Yet because anonymous tests are not reported to confidential HIV/AIDS surveillance systems, surveillance data may not be representative of individuals who are tested at anonymous testing sites (CDC, 1999, 2011b).6 Research on the demographic character- istics of anonymous testers shows that they are often MSM and younger, more often white, and more likely to report more years of education than individuals who receive confidential testing (Markovitz et al., 2011). Most U.S. states and territories currently offer both anonymous and confidential HIV testing, although some have only confidential testing (Table 4-1). 6 In addition, in a 2007 survey of HIV/AIDS surveillance capacity in health departments, only 20 percent of health departments responded that it is permissible in their jurisdiction for a provider or laboratory to report a new HIV or AIDS case without a name or other personal identifier (CSTE, 2009).

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245 BARRIERS TO THE COLLECTION OF HIV CARE DATA Many cases of HIV/AIDS identified at anonymous testing sites, along with CD4 count and viral load information, are added to surveillance after in- dividuals enter care. One of the core functions of health departments in response to the HIV epidemic is the collection and analysis of data on the number of PLWHA and demographic data on individuals who receive services through feder- ally funded HIV/AIDS programs within a jurisdiction (NASTAD, 2007). The data are compiled and analyzed at the local and national levels and serve as the basis for decision making about funding to state and local health departments to support HIV/AIDS programs. Sharing of identifiable health information across health departments is often necessary to link data for individuals who receive HIV care and supportive services across multiple jurisdictions. However, local laws designed to protect identifiable information may inhibit data sharing among state public health authorities, compromising the accuracy of the analysis of and conclusions drawn from the data (Hodge et al., 2011; Personal communication, Carmine Grasso, New Jersey Department of Health and Senior Services, August 9, 2011).7 Funding mechanisms can result in inadequate resources within health departments to support activities related specifically to data collection and analysis. When data collection and analysis activities are funded, they may be lumped into the category of administrative costs, which may result in inadequate allocation of financial and staff resources to these activities. For example, due to budget constraints that impede the employment of staff with expertise in data collection and analysis, health departments may del- egate data collection and analysis activities to support staff who may not be sufficiently trained to perform these activities (Personal communication, Carmine Grasso, New Jersey Department of Health and Senior Services, August 9, 2011). Reducing Provider Reporting Burden Grantees of federally funded HIV/AIDS programs are an important source of HIV care and supportive services data. To comply with funding requirements, grantees must generate and submit to federal agencies nu- merous programmatic reports. These reports contain program information that can inform how well the clinical care and supportive services needs of PLWHA are being met locally and nationally. The range of data contained in such reports includes, but is not limited to, the number and demograph- ics of PLWHA within a specific jurisdiction or provider setting who receive 7 The CDC issued guidance on standards for data security, confidentiality, and use across surveillance and program areas for HIV, viral hepatitis, STD, and TB prevention in state and local health jurisdictions in December 2011 (CDC, 2011a).

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246 MONITORING HIV CARE IN THE UNITED STATES medical services, pharmaceutical assistance, and supportive services such as housing assistance, as well as information on the provision of care and sup- portive services to communities that are disproportionately affected by HIV. As the recipients of numerous core and supplemental HIV/AIDS grant awards, health departments are central to the collection and reporting of data to monitor progress in achieving NHAS goals. However, health depart- ments are currently overburdened with myriad grant-related administrative activities. The scope of reporting requirements for state health departments in 2010 included 96 reports for core and supplemental (e.g., STD and viral hepatitis) HIV/AIDS grant awards (Figure 4-1). Reporting includes several hundred specific variables (NASTAD, 2011; PACHA, 2011). Furthermore, the National Alliance of State and Territorial AIDS Directors (NASTAD) reports that the current requirements for reporting on program planning, progress, and performance measures are project specific and inconsistent across related programming (e.g., HIV prevention and STD prevention and control; HIV prevention and HIV/AIDS care). Thus, health departments must modify their reporting practices to meet the specifications of each grant. Projects also operate on different grant cycles, which further compli- cates reporting. There is also substantial duplication in reporting practices owing to differences in the schedules for reporting on program progress and for local disease reporting and service data collection and validation. Health departments often must submit incomplete or inaccurate data on program progress, and then resubmit the data after local data are updated (to ensure the accuracy and completeness of program progress reports) (NASTAD, 2012).8 According to the Presidential Advisory Council on HIV/AIDS (PACHA), the current reporting requirements for grantees of federally funded pro- grams have not resulted in a set of metrics by which to thoroughly moni- tor the HIV epidemic. Nor have they yielded data of sufficient quality to effectively evaluate and manage federal HIV/AIDS programs (PACHA, 2011). A smaller number of key metrics that are relevant to NHAS goals could be used across federal agencies to monitor progress in managing the epidemic. Use of metrics that are comparable across funding agencies would also help to streamline reporting requirements for grantees (PACHA, 2011). While the committee was preparing this report, there was an effort under way by the U.S. Department of Health and Human Services (HHS) to identify a uniform set of HIV-related metrics to be used across funding agencies and reduce reporting burden (HHS, 2011; Valdiserri and Forsyth, 8 Inaddition, many health departments currently face staff challenges that affect reporting capacity. Budget cuts in many states’ HIV/AIDS and other infectious disease programs in health departments have resulted in hiring freezes and the elimination of staff positions, result- ing in less capacity for the completion of the required reports (NASTAD, 2010).

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247 BARRIERS TO THE COLLECTION OF HIV CARE DATA FIGURE 4-1 Federal reporting requirements for core and supplemental HIV/AIDS grant awards administered by state health department HIV/AIDS directors. SOURCE: Adapted from NASTAD, 2011. 2011). The committee supports this current effort and recommends that it be maintained and institutionalized (see recommendation 4-1 at the end of this chapter) so that data needs can be periodically reprioritized based on changes in the HIV epidemic and to facilitate continued minimization of grantee reporting burden. Legislative action may also be necessary to reduce reporting burden in certain instances because some of the overlapping and duplicative reporting activities are delineated in federal legislative or appropriations language. For example, per its authorizing legislation, the Ryan White HIV/AIDS Program contains multiple parts. Each part includes several different fund- ing components and requirements that are often in conflict, duplicative, and may be burdensome for grantees. In addition to health departments, sites that provide direct clinical care and supportive services to PLWHA could stand to benefit from the use of a streamlined set of metrics for HIV monitoring. Such entities, such as community health centers (CHCs), may themselves be the direct grantees of federally funded HIV/AIDS core or supplemental programs and report program data to funding agencies, or they may provide data to health departments that are then incorporated into reports for federal agencies. Providers of HIV clinical care and supportive services have many com- peting responsibilities and restrictions (e.g., budget or expertise related) on the amount of staff time that can be devoted to reporting activities. As potential users of the collected data, the various providers of HIV care and supportive services can be involved in decision making about what data are

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262 MONITORING HIV CARE IN THE UNITED STATES to disclose health information for treatment reasons but for very limited cir- cumstances. Some states have limitations on disclosures that may be made for treatment, such as restricting the type of information that can be shared and with whom. In several states, recipients are prohibited from further disclosure of the information except as authorized under the terms of the law. A few states’ mental health laws treat mental health information the same as other types of health information and generally permit disclosure without patient permission for treatment purposes. (The review did not include outpatient mental health treatment facilities.) With respect to general clinical information, Pritts and colleagues (2009b) found that the HIPAA Privacy Rule sets the standard for disclo- sure of information by hospitals and medical doctors in many states (either expressly or implicitly). In other states, statutory or regulatory provisions independently allow for disclosure of health information without patient permission for treatment purposes. A handful of states have laws that ei- ther limit disclosures to providers who previously provided treatment to the patient, or allow patients to opt out of such disclosures (Pritts et al., 2009b). Under the Texas Health and Safety Code, for example, disclosure of a patient’s health care information by hospitals without the patient’s authorization is permitted only: to a health care provider who is rendering health care to the patient when the request for the disclosure is made . . . [or] . . . to a prospective health care provider for the purpose of securing the services of that health care provider as part of the patient’s continuum of care, as determined by the patient’s attending physician (Texas Health and Safety Code § 241.153). Most states’ laws appear to permit pharmacists to disclose general clinical information for treatment reasons without patient permission. However, a few states indicate that the decision as to whether to provide such information is based on the pharmacists’ own professional judg- ment. In other states, pharmacists may disclose clinical health information without patient consent only to specific types of care providers (Pritts et al., 2009b). Disclosure of Information Maintained by Clinical Laboratories State law controls who is authorized to receive the results of tests performed by clini- cal laboratories, as described in the discussion of CLIA above. A survey of state laws on the release of clinical laboratory test results by independent (rather than public health) laboratories showed that clinical laboratory licensing laws often restrict the release of test results to the person who ordered the test or the person authorized to use the test (Pritts et al., 2009a). Most states do not expressly allow results to be released to other

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263 BARRIERS TO THE COLLECTION OF HIV CARE DATA providers.22,23 In addition, a few states have laws that limit the release of test results to health care providers who are licensed to practice within the state, presenting obstacles to the provision of care across state lines. Pritts and colleagues (2009a) observe that states that provide height- ened confidentiality for specific medical conditions such as HIV/AIDS im- pose an additional layer of complexity on the manner in which clinical laboratories may release test results. It is not always apparent whether clinical laboratories are subject to these statutes and regulations, which are written to cover a broad range of entities. As of 2008, laws in a hand- ful of states with HIV/AIDS confidentiality laws that are broad enough to possibly include independent clinical laboratories expressly indicate that HIV test results must or may be provided to the person who ordered the test. In about half of the states, HIV/AIDS confidentiality laws appear to permit the disclosure of HIV test results to health care providers and health care facilities for treatment reasons without the patient’s permission. Some states have a “need-to-know” standard on the release of HIV test results, perhaps leaving disclosure open to various interpretations (Pritts et al., 2009a). For example, Ohio’s code on the disclosure of HIV test results to providers states: The results of an HIV test or a diagnosis of AIDS or an AIDS-related condition may be disclosed to a health care provider, or an authorized agent or employee of a health care facility or a health care provider, if the provider, agent, or employee has a medical need to know the information and is participating in the diagnosis, care, or treatment of the individual on whom the test was performed or who has been diagnosed as having AIDS or an AIDS-related condition (OhioRev.Code.Ann.3701.243 [B]). Privacy Issues in State Public Health Agencies The Public Health Data Standards Consortium conducted a survey of past, present, and future privacy-related issues faced by public health agencies in 2008. Among cur- rent issues, public health agencies identified the need for a standardized way to ensure data de-identification, because statutes (federal and state) have different definitions of de-identification. Agencies also identified the need for secure and reliable methods for linkages across databases. How to handle data breaches and identity theft in an environment where more 22 A sof 2008, about half of the states had laws that expressly allowed or required clinical laboratories to release test results to authorized providers who requested the test. In some of these states, test results may be released only to the person who ordered the test; in other states, the law enumerates the health care providers who are authorized to order tests and receive results (Pritts et al., 2009a). 23 Where state law does not specify who is authorized to receive test results, clinical laboratories may send results only to persons who ordered the test or who are responsible for using the test (Pritts et al., 2009a).

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264 MONITORING HIV CARE IN THE UNITED STATES information is being collected electronically was another concern. Privacy officers in public health agencies noted challenges to ensuring privacy and security-related training and education of the workforce as well as a need for clarification on oversight responsibilities and enforcement. One HIV- specific issue noted by privacy officers was the new federal requirement to report HIV/AIDS data to states with identifiable information (name), which required amendments to regulations as well as assurances to PLWHA that their data will be protected (PHDSC, 2008). Participating health agencies also noted several new and emerging health information privacy issues. Privacy officers in health agencies identi- fied the need to develop state public health privacy frameworks to simplify understanding and documentation of privacy regulations pertaining to the reporting of health information. The growing demand for identifiable information for research purposes that is occurring as a result of increased availability of data in electronic form creates greater opportunity for link- ing data across systems and tracking individual-level data longitudinally. However, privacy officers reported that these changes present more complex privacy issues for state agency institutional review boards and raise ethical challenges in balancing increased access to data for research and ensuring the privacy and security of health information (PHDSC, 2008). CONCLUSIONS AND RECOMMENDATIONS Reimbursement-Related Barriers to the Collection of HIV Care Data • Reimbursement policies and practices can result in the dispersal of care information across multiple entities. For example, care services that are carved out of a health plan (e.g., behavioral health, trans- portation, dental, and pharmacy benefits) may not be recorded in the primary insurer’s claims records. Therefore, the primary insurer’s records will not provide a complete medical history of the patient. Means to link data across reimbursement systems will be required to gain access to a complete medical history for many PLWHA. Reporting-Related Barriers to the Collection of HIV Care Data • Several of the core indicators recommended by the committee re- quire estimates of the total number of people diagnosed with HIV in the United States, as well as dates and values of CD4 count and viral load tests. Incomplete HIV/AIDS case reporting by provid- ers to public health authorities; variability in the levels at which CD4 counts and viral loads are reportable across states; and a

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265 BARRIERS TO THE COLLECTION OF HIV CARE DATA lack of mechanisms for health departments to share data across jurisdictions may influence the comprehensiveness and accuracy of reported data. Staffing, administrative, and budgetary constraints are other potential barriers to reporting for health departments and other providers of HIV care and supportive services. • Current national estimates of the number of people who are tested for HIV at anonymous sites were not available at the time of this report. Most states do offer anonymous HIV testing, however. Although anonymous testing should be acknowledged as a minor barrier to the completeness of HIV surveillance data, its benefits may outweigh this drawback since the availability of anonymous testing may promote testing among individuals who are concerned about potential breaches in the confidentiality of their testing information. Reducing Data Reporting Burden • Grantees of federally funded HIV/AIDS programs are a vital source of HIV care and supportive services data, but are currently over- burdened by the many reporting obligations they are required to fulfill as a condition of program funding. The reporting require- ments for core and supplemental HIV/AIDS programs administered by health departments are often project specific, even across related programming (e.g., HIV prevention and HIV/AIDS care), requiring staff to modify their reporting practices for each grant. Reporting is further complicated by the fact that programs operate on different grant cycles so that reports for related programs are due a different times during the year. According to the Presidential Advisory Coun- cil on HIV/AIDS, the current reporting requirements for grantees of federally funded HIV/AIDS programs have not resulted in a set of metrics by which to thoroughly monitor the HIV epidemic or to evaluate federal HIV/AIDS programs. A smaller number of metrics that are aligned with NHAS goals could be used across federal agencies to monitor progress in managing the epidemic. As it was preparing this report, the committee learned that there is an effort under way by HHS to identify a set of HIV-related metrics to be used across funding agencies and reduce reporting burden for program grantees. The committee supports this current effort and recommends that it be maintained so that data needs can be peri- odically reprioritized based on changes in the HIV epidemic and to facilitate continued minimization of grantee reporting burden.

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266 MONITORING HIV CARE IN THE UNITED STATES Recommendation 4-1. The Department of Health and Human Services should maintain and institutionalize the existing effort to streamline data collection and reduce reporting requirements for federally funded HIV/AIDS programs. This will allow for periodic reprioritization of data needs based on changes in the HIV epi- demic that occur over time, and ensure the continuous availability of data to effectively monitor HIV care while minimizing reporting requirements for grantees. The data reprioritization should involve health departments, HIV provider organizations, and federal agen- cies that are major funders of HIV/AIDS programs, including HHS, the Department of Veterans Affairs, and the Department of Hous- ing and Urban Development. • Engagement of health departments, HIV care clinicians, and other stakeholders in the planning of an HIV/AIDS data collection effort can help to identify what data are most important to collect (since these groups are often users of the collected data) as well as pro- cesses for collecting those data. Involvement of stakeholders may foster greater investment in data collection and reduce reporting burden since the data collected will be more closely aligned with stakeholders’ own data needs. Other Policy Barriers to the Collection of HIV Care Data • The various sources of care and care coverage in the United States each have their own eligibility requirements. As a result, many PLWHA shift in and out of care and change providers over the course of their illness, which creates opportunities for gaps or losses of patient data and impedes longitudinal tracking of care. Improved exchange of data across systems maintained by insurers and providers would help to address this problem, as discussed in Chapter 5. • Several provisions of the ACA are being implemented differently by states. Resulting differences across states in access to health insur- ance and health care will have to be taken into consideration for purposes of monitoring the improvements HIV care resulting from the ACA and more generally. • Providers of HIV care and supportive services contend with numer- ous federal laws and state statutes and regulations on the proper use and disclosure of patient information. The inconsistent nature of these protections, which often leave the decision of whether or

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267 BARRIERS TO THE COLLECTION OF HIV CARE DATA not to disclose requested patient information open to various inter- pretations, may result in discrepancies in data sharing and report- ing across states and providers. Such discrepancies may influence the availability and quality of data needed to estimate indicators of HIV care and supportive services. Recommendation 4-2. The Department of Health and Human Ser- vices should issue guidance to the HIV care community to clarify what is permissible patient information to share given federal and state privacy laws. REFERENCES Agee, B. S., E. Funkhouser, J. M. Roseman, H. Fawal, S. D. Holmberg, and S. H. Vermund. 2006. Migration patterns following HIV diagnosis among adults residing in the non- urban deep south. AIDS Care 18(Suppl 1):S51-S58. Altice, F. L., A. Kamarulzaman, V. V. Soriano, M. Schechter, and G. H. Friedland. 2010. Treatment of medical, psychiatric, and substance-use comorbidities in people infected with HIV who use drugs. The Lancet 376:367-387. AMA (American Medical Association). 2010. The Impact of Medicare Physician Payment on Seniors’ Access to Care http://media.washingtonpost.com/wp-srv/outlook/documents/ medicare_survey_results_061810.pdf (accessed March 7, 2012). Armstrong, D., E. Kline-Rogers, S. M. Jani, E. B. Goldman, J. Fang, D. Mukherjee, B. K. Nalla-Mothu, and K. A. Eagle. 2005. Potential impact of the HIPAA Privacy Rule on data collection in a registry of patients with acute coronary syndrome. Archives of In- ternal Medicine 23:1125-1129. Bachman, J., H. A. Pincus, J. K. Houtsinger, and J. Unutzer. 2006. Funding mechanisms for depression care management: Opportunities and challenges. General Hospital Psychiatry 28: 278-288. Berk, M. L., C. L. Schur, J. L. Dunbar, S. Bozzette, and M. Shapiro. 2003. Short report: Migra- tion patterns among persons living with HIV. Social Science & Medicine 57:1091-1097. Bindman, A. B., D. Osmond, F. M. Hecht, J. S. Lehman, K. Vranizan, D. Keane, and A. Reingold. 1998. Multistate evaluation of anonymous HIV testing and access to medical care. Journal of the American Medical Association 280(16):1416-1420. Buehler, J. W., R. L. Berkelman, and J. K. Stehr-Green. 1992. The completeness of AIDS sur- veillance. Journal of Acquired Immune Deficiency Syndromes 5:257-264. CareActTarget. 2011. ADAP Data Report Proposed Client-Level and Grantee-Level Data Variables. Grantee Worksheets. http://www.careacttarget.org/library/media/ADAP/ ADAPDataReportProposedCLDVarWorksheet.pdf and http://www.careacttarget.org/ library/media/ADAP/ADAPDataReportProposedGLDVarWorksheet.pdf (accessed March 7, 2012). Carey, R. 2010. Health Insurance Exchanges: Key Issues for State Implementation. http:// www.rwjf.org/files/research/70388.pdf (accessed March 7, 2012). CDC (Centers for Disease Control and Prevention). 1999. Guidelines for national human immunodeficiency virus case surveillance, including monitoring for human immunodefi- ciency virus infection and acquired immunodeficiency syndrome. Morbidity and Mortal- ity Weekly Report 48(RR13):1-28.

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