1


Introduction

In September 2010, the White House Office of National AIDS Policy (ONAP) commissioned the Institute of Medicine (IOM) to convene a committee of experts to assess available public and private data systems that capture HIV care information; investigate ways to maximize the usefulness of, and recommend approaches for supplementing, existing data systems; and provide recommendations for the most critical data and indicators to help gauge the impact of the National HIV/AIDS Strategy (NHAS) and the Patient Protection and Affordable Care Act (ACA, P.L. 111-148) on HIV care.

The committee was asked to address seven additional questions in its response to this charge, which are as follows:

1. What are the best sources of data (and which data elements should be used) from public and private HIV care databases to assess core indicators related to continuous care and access to supportive services, such as housing, for people living with HIV?

a. What data collection items need to be revised or reconsidered in existing databases of care and services provided to people living with HIV and in demographic data about populations receiving these services? Are there proposed changes that can provide necessary data without adding additional burden to data collection?

b. What is the difference between claims data and clinical data found in medical records and do these differences encompass gaps in measures for HIV care?



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1 Introduction In September 2010, the White House Office of National AIDS Policy (ONAP) commissioned the Institute of Medicine (IOM) to convene a com- mittee of experts to assess available public and private data systems that capture HIV care information; investigate ways to maximize the usefulness of, and recommend approaches for supplementing, existing data systems; and provide recommendations for the most critical data and indicators to help gauge the impact of the National HIV/AIDS Strategy (NHAS) and the Patient Protection and Affordable Care Act (ACA, P.L. 111-148) on HIV care. The committee was asked to address seven additional questions in its response to this charge, which are as follows: 1. What are the best sources of data (and which data elements should be used) from public and private HIV care databases to assess core indicators related to continuous care and access to supportive ser- vices, such as housing, for people living with HIV? a. What data collection items need to be revised or reconsidered in existing databases of care and services provided to people living with HIV and in demographic data about populations receiving these services? Are there proposed changes that can provide nec- essary data without adding additional burden to data collection? b. What is the difference between claims data and clinical data found in medical records and do these differences encompass gaps in measures for HIV care? 19

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20 MONITORING HIV CARE IN THE UNITED STATES 2. What similar data collection or standardization efforts are cur- rently under way by public agencies or private industry that should be tapped? 3. How do we regularly obtain data (core indicators) that capture the care experiences of people living with HIV without substantial new investments? 4. What situations may impose barriers to the collection of core indicators? a. What policies, reimbursement issues or reporting issues need to be addressed to collect necessary data? b. How can data be collected in a way that will not significantly increase provider burden? 5. How can federal agencies efficiently analyze care indicators and disseminate data to improve HIV care quality? 6. What models or best practices in data system integration can be gleaned from public agencies or private industry to make existing data systems and core indicators interoperable? a. Which among these models or combination of models would be most cost effective? 7. How should health information technology (including electronic medical records) be utilized and configured in order to improve the collection of comprehensive data describing the care experiences of people living with HIV? The Committee to Review Data Systems for Monitoring HIV Care was formed to carry out this study. The 17-member committee comprises experts in clinical HIV care, mental health, health services research, pri- vate health insurance, health policy, housing policy, the Ryan White HIV/ AIDS Program, biostatistics, epidemiology, health disparities, and bio- medical informatics (see Appendix A, Biographical Sketches of Committee Members). This is the first of two reports to be prepared by this committee. In a forthcoming report, also requested by ONAP, the committee will address the broad question of how to obtain national estimates that characterize the health care of people living with HIV/AIDS (PLWHA) in the United States. The second report will include discussion of challenges and best practices from previous large scale and nationally representative studies of PLWHA as well as other populations. STUDY CONTEXT The number of PLWHA in the United States is increasing every year in large part due to the availability of effective antiretroviral therapy (ART),

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21 INTRODUCTION which has allowed PLWHA to live longer and healthier lives (CDC, 2011b), and to a steady number of new HIV infections occurring each year. Nearly 1.2 million individuals age ≥13 were living with HIV infection (both AIDS and non-AIDS cases) at the end of 2008, the most recent year for which national prevalence data are available (CDC, 2011c). The total prevalent cases represent a 6.5 percent increase in the number of PLWHA from the estimate for 2006 (CDC, 2008, 2011c). Despite overall improvements in survival, there continue to be many challenges to curbing the HIV epidemic. For example, an estimated 50,000 people in the United States were newly infected with HIV each year from 2006 through 2009 (Prejean et al., 2011), and approximately 16,000 people with AIDS die each year (CDC, 2011c). Many PLWHA remain undiagnosed; 20 percent of the prevalent cases esti- mated for 2008 were among those whose infection was undiagnosed. The Centers for Disease Control and Prevention (CDC) estimates that 77 per- cent of people who are diagnosed are linked to care within 3 to 4 months and that only 51 percent are retained in ongoing care (CDC, 2011c). ART can help to reduce the level of HIV virus in the blood, sometimes to viral suppression (i.e., to an undetectable level), resulting in improved health outcomes for PLWHA and reduced risk of HIV transmission (Cohen et al., 2011; Granich et al., 2009).1 Yet, only 19–28 percent of PLWHA are virally suppressed (Gardner et al., 2011). The evolving and often complex health care needs of PLWHA highlight the importance of making available continuous and coordinated quality HIV care. It is estimated that by 2015, more than half of PLWHA in the United States will be 50 or older (Effros et al., 2008; Justice, 2010). With improved survival and the aging of the population of PLWHA, there is a need for care models that address changing patterns of comorbidity that include increasing rates of chronic “non-AIDS” conditions, such as cardio- vascular disease, diabetes, hypertension, certain cancers, and psychosocial comorbidities, and the influence of HIV infection and long-term treatment on the etiology and progression of disease (Chu and Selwyn, 2011; Justice, 2010; Mugavero et al., 2011; Shiels et al., 2011). HIV care should also be oriented to address the full range of care and supportive service needs of PLWHA so that they may better manage their HIV infection. HIV disproportionately impacts populations with care and supportive service needs that, when unmet, reduce access and adher- ence to HIV care and treatment (Robertson et al., 2004; Weaver et al., 1 Being in HIV care may help to reduce risk of HIV transmission in ways besides having a reduced viral load as a result of being on antiretroviral therapy (ART). For example, provider counseling and linkage to supportive services may help to promote behaviors (e.g., consistent use of ART, safer sex, use of clean syringes) that reduce risk of HIV transmission (Parashar et al., 2011; Sikkema et al., 2010).

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22 MONITORING HIV CARE IN THE UNITED STATES 2009). The provision of wraparound services such as case management, mental health services, substance abuse treatment, and transportation and housing assistance for PLWHA improves linkage and retention in care (Ashman et al., 2002; Mugavero et al., 2011). To help reduce disparities among subgroups of PLWHA, care should also be responsive to the diver- sity of the population by taking into account demographic variables such as sex, gender, age, socioeconomic status, race and ethnicity, and sexual orientation (Bhavan et al., 2008; Bogart et al., 2010; Christopoulos et al., 2011; Moore, 2011). To monitor and improve HIV care and address care disparities, data on the care experiences of PLWHA have to be collected and analyzed. Several organizations, such as the New York State Department of Health AIDS Institute, Kaiser Permanente, the Veterans Health Administration, and the Ryan White HIV/AIDS Program (a federally funded program, ad- ministered by the Health Resources and Services Administration (HRSA), which is considered a payer of last resort for low-income, uninsured, and underinsured PLWHA), have developed measures to assess the quality of their HIV care delivery (Horberg et al., 2010). However, these efforts have not been coordinated, resulting in several unaligned measures of HIV care quality. Development of a more standard set of measures that could be applied across a variety of care delivery platforms would allow for better comparisons and longitudinal tracking of care (Horberg et al., 2010).2 Sources of care and coverage for PLWHA are important to consider for assessing the impact of the insurance reform that is occurring as a result of the ACA (described later in this chapter) on HIV care. An analysis of data from a convenience sample of 20,555 PLWHA attending high-volume HIV care sites participating in the HIV Research Network showed that Medicaid was the source of insurance at first outpatient visit for the largest proportion of patients (32 percent) followed by the Ryan White HIV/AIDS Program (24 percent). Commercial health insurance and Medicare were the source of insurance at first outpatient visit for 17 percent and 14 percent of patients, respectively (Table 1-1) (Fleishman and Gebo, 2012).3 A recent analysis of older data from the Medical Monitoring Project 2 Recognizing the need for aligned HIV care quality measurement, in 2007 the National Committee for Quality Assurance in partnership with the American Medical Association, HRSA, and the Infectious Diseases Society of America and HIV Medicine Association es- tablished “a single set of aligned HIV quality measures for care processes and intermediate outcomes for external accountability and individual quality improvement” (Horberg et al., 2010). Chapter 2 describes these measures in more detail. 3 Data are from care sites located in Baltimore, Maryland; Tampa, Florida; Dallas, Texas; New York, New York (three sites); Rochester, New York; Philadelphia, Pennsylvania; Detroit, Michigan; San Diego, California; Oakland, California; and Portland, Oregon.

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23 INTRODUCTION TABLE 1-1 Insurance at First Outpatient Visit for Patients Attending Adult Care Sites in the HIV Research Network, CY2010 Insurance Number of Patients (%) Commercial 3,580 (17) Medicaid 6,652 (32) Medicare 2,946 (14) Dual (Medicaid and Medicare) 970 (5) Uninsured (self pay) 544 (3) Ryan White 4,955 (24) Other/Unknown 908 (4) Total number of patients 20,555 SOURCE: Fleishman and Gebo (2012). (MMP), a national survey of the health care experiences and needs of adult PLWHA receiving medical care in the United States, showed that 84 percent of participants (3,040 of 3,643) had one or more types of health insurance coverage during the 12 months prior to the survey. Of those with health insurance, 45 percent had Medicaid, 37 percent had private health insurance or coverage through a health maintenance organization, and 30 percent had Medicare (Blair et al., 2011).4 There will likely be growth over the next few years in the number of PLWHA on Medicare as a result of the aging of this population and ACA provisions related to the Medicare Part D drug benefit (described later in this chapter). Continuous access to medications is an important component of HIV care. As noted above, ART is vital to help PLWHA achieve and main- tain viral suppression and thereby improve health outcomes and reduce HIV transmission (Cohen et al., 2011; Granich et al., 2009). Continu- ous access to and adherence to ART also may decrease the occurrence of HIV drug resistance (Gardner et al., 2010; Sethi et al., 2003). The AIDS Drug Assistance Program (ADAP), a component of the Ryan White HIV/ AIDS Program administered by states to cover the costs of Food and Drug Administration (FDA)-approved prescription drugs, is a common source of prescription drug coverage for low-income PLWHA. ADAPs provided medications to more than 135,000 clients in 2010 (NASTAD, 2011). In the MMP survey described previously, ADAPs were the primary method of pay- ment for prescription medications for 25 percent of participants. Medicaid or Medicare and private health care coverage were the primary method of payment for 41 percent and 25 percent of participants, respectively (Blair et al., 2011). 4 Survey respondents could select more than one source of health insurance coverage (Blair et al., 2011).

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24 MONITORING HIV CARE IN THE UNITED STATES The National HIV/AIDS Strategy and the Patient Protection and Affordable Care Act ONAP is tasked with coordinating efforts of the federal government to reduce the number of HIV infections in the United States (ONAP, 2011a). Noting the continuing challenges to curbing the domestic HIV epidemic, ONAP released its NHAS in July 2010. The primary goals of the NHAS are to (1) reduce the number of people who become infected with HIV; (2) increase access to care and optimize health outcomes for PLWHA; and (3) reduce HIV-related health disparities (ONAP, 2010). The NHAS identifies action steps for each of the three primary goals and identifies quantitative targets to be achieved by 2015 (see Box 1-1).5 Because increased coordination and collaboration among HIV care programs is necessary to meeting the goals of the NHAS, the strategy also includes an objective to achieve a more coordinated national response to the epidemic among federal, state, territorial, local, and tribal govern- ments (ONAP, 2010). As described in the IOM report Crossing the Quality Chasm: A New Health Care System for the 21st Century, the U.S. health care system as currently structured is uncoordinated and inefficient. Care providers often operate as silos “providing care without the benefit of com- plete information about the patient’s condition, medical history, services provided in other settings, or medications prescribed by other clinicians” (IOM, 2001). HIV care in particular is provided through a patchwork of payers with different eligibility requirements that cause many PLWHA to shift in and out of eligibility for care coverage over the course of their ill- ness (IOM, 2005, 2011b). Better coordination and communication across HIV providers and programs could improve continuity of care for PLWHA, who often have complex, long-term treatment and supportive service needs (Mugavero et al., 2011). The work of this IOM committee is named in the operational plans for the NHAS as one of the key activities that ONAP is undertaking “to address gaps in data collection, analysis, and integration of the care and treatment experiences of people living with HIV” within the NHAS goal to achieve a more coordinated national response to the HIV epidemic (ONAP, 2011b). The NHAS is intended to complement the implementation of the ACA (ONAP, 2011b). If implemented as originally designed, the ACA will pro- 5 In addition, an overview of the operational plans for lead agencies implementing the National HIV/AIDS Strategy (NHAS), including the departments of Health and Human Services and its subagencies, Housing and Urban Development, Justice, Labor, Veterans Affairs, and the Social Security Administration, was released in February 2011 (ONAP, 2011b). The report outlines key activities that agencies are undertaking for each of the three NHAS goals as well as to increase coordination of HIV programs and improve mechanisms to monitor and report on progress toward achieving national goals.

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25 INTRODUCTION vide health coverage to over 30 million uninsured citizens by 2021 (CBO, 2011), including many PLWHA, and will establish private insurance market regulations. A few of the changes from the ACA that are likely to impact PLWHA are as follows: • Expansion of the Medicaid Program: The Medicaid program, cur- rently the largest single source of care coverage for people with HIV, will eliminate current categorical eligibility requirements such as being pregnant or disabled. Coverage will be expanded to in- clude all non-Medicare eligible individuals with incomes up to 133 percent of the federal poverty level (FPL) beginning in 2014. People living with HIV who meet the new income threshold will no longer have to wait for an AIDS diagnosis or other diagnosis of disability to become eligible for Medicaid (KFF, 2011; NASTAD, 2010).6 • Phasing out the Medicare Part D Prescription Drug Coverage Gap: Medicare Part D prescription drug benefit recipients must pay out-of-pocket for the full cost of prescription drugs while in a coverage gap (i.e., between the time recipients and their drug plans have spent a certain amount of money for covered medications and the time catastrophic coverage begins).7 Prior to the ACA, PLWHA on ART were likely to have expenditures within the coverage gap unless they were receiving low-income subsidies (KFF, 2006). The ACA gradually phases down the coverage gap so that by 2020, beneficiaries will be responsible for 25 percent of the costs for brand name and generic drugs while in the coverage gap (CMS, 2012; KFF, 2011), making medications more affordable to PLWHA who have Medicare Part D drug coverage. In addition, starting in 2011, ADAP prescription drug benefits began counting toward enrollees’ Medicare Part D “true-out-of-pocket” (TrOOP) spend- ing limit, which determines when catastrophic coverage begins. This change will shift some of the costs of prescription drugs from ADAP to Medicare (HRSA, 2010). • Increased Private Health Insurance Access and Consumer Protec- tions: The ACA will increase access to private health insurance and protect beneficiaries from being denied coverage and other unfavor- 6 As of April 2010, states had the option to phase in expansion of Medicaid to the newly eligible as long as the state does not offer coverage to (1) individuals with higher income before those with lower income or (2) to parents, unless their children are enrolled in Medicaid or other coverage. A cost-neutrality requirement for the expansion of Medicaid to nondisabled persons with HIV through a waiver process (i.e., that it cost the federal government no more than it would have with the waiver) has been a barrier to states taking up this option (NASTAD, 2010). 7 Up to $4,700 in out-of-pocket costs in 2012 (CMS, 2012).

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26 MONITORING HIV CARE IN THE UNITED STATES BOX 1-1 National HIV/AIDS Strategy Action Steps and Targets Reducing New HIV infections Action Steps • ntensify HIV prevention efforts in communities where HIV is most heavily I concentrated. • xpand targeted efforts to prevent HIV infection using a combination of E effective, evidence-based approaches. • Educate all Americans about the threat of HIV and how to prevent it. Targets By 2015, • lower the annual number of new infections by 25 percent. • educe the HIV transmission rate, which is a measure of annual transmis- r sions in relation to the number of people living with HIV, by 30 percent. • ncrease from 79 to 90 percent the percentage of people living with HIV i who know their serostatus. Increasing Access to Care and Improving Health Outcomes for People Liv- ing with HIV Action Steps • stablish a seamless system to immediately link people to continuous and E coordinated quality care when they are diagnosed with HIV. • ake deliberate steps to increase the number and diversity of available T providers of clinical care and related services for people living with HIV. • upport people living with HIV with co-occurring health conditions and S those who have challenges meeting their basic needs, such as housing. Targets By 2015, • ncrease the proportion of newly diagnosed patients linked to clinical care i within 3 months of their HIV diagnosis from 65 to 85 percent. • ncrease the proportion of Ryan White HIV/AIDS Program clients who are i in care (at least two visits for routine HIV medical care in 12 months at least 3 months apart) from 73 to 80 percent. • ncrease the percentage of Ryan White HIV/AIDS Program clients with i permanent housing from 82 to 86 percent.

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27 INTRODUCTION BOX 1-1 Continued Reducing HIV-Related Health Disparities and Health Inequities Action Steps • Reduce HIV-related mortality in communities at high risk for HIV infection. • dopt community-level approaches to reduce HIV infection in high-risk A communities. • Reduce stigma and discrimination against people living with HIV. Targets By 2015, • ncrease the proportion of HIV diagnosed gay and bisexual men with un- i detectable viral load by 20 percent. • ncrease the proportion of HIV diagnosed Black Americans with undetect- i able viral load by 20 percent. • ncrease the proportion of HIV diagnosed Latinos with undetectable viral i load by 20 percent. Achieving a More Coordinated National Response to the HIV Epidemic in the United States • ncrease the coordination of HIV programs across the federal govern- I ment and between federal agencies and state, territorial, local, and tribal governments. • evelop improved mechanisms to monitor and report on progress toward D achieving national goals. SOURCE: ONAP, 2010. able industry practices. Beginning in 2010, private health insurers were no longer able to deny coverage to children with preexisting conditions such as HIV/AIDS (KFF, 2011). In 2014, a guaranteed availability of insurance provision ensures the issuance and renew- ability of health insurance regardless of health status, and without increased premiums, for people with preexisting conditions. In the meantime, temporary preexisting insurance plans with subsidized premiums are available to adults with a preexisting medical condi- tion who have been uninsured for at least 6 months (KFF, 2011). Also starting in 2014, states will set up health insurance exchanges designed to make health coverage easier to buy and more afford- able. Premiums for insurance will be offered on a sliding scale for people at 133 to 400 percent of the FPL who are not eligible for Medicaid based on income. Private insurance companies could no

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28 MONITORING HIV CARE IN THE UNITED STATES longer cancel or rescind coverage (except in the case of fraud) or impose a lifetime cap on the amount of coverage an individual can receive starting in 2010 (HHS, 2011b; KFF, 2011).8 • Expansion of Coverage for Preventive Health Services: As of Sep- tember 2010, the ACA requires new private health insurance plans to cover the cost of preventive services that have been determined by the U.S. Preventive Services Task Force (USPSTF) to have high or moderate certainty of substantial or moderate net (popula- tion) benefit (USPSTF, 2010) and of immunizations recommended by the Advisory Committee on Immunization Practices (CDC, 2011a). The ACA also requires coverage for an annual wellness visit under Medicare, eliminates cost sharing for recommended preventive services covered by Medicare, and gives state Medicaid programs financial incentives to cover preventive services (Cassidy, 2010). Preventive services recommended by the USPSTF that are of particular interest to PLWHA include screening examinations for sexually transmitted infections (STIs), certain cancers, depres- sion, diabetes and other conditions, as well as several vaccina- tions (USPSTF, 2010).9 In response to recommendations outlined in the IOM report Clinical Preventive Services for Women: Closing the Gaps (IOM, 2011a), in August 2011 the U.S. Department of Health and Human Services (HHS) announced new guidelines for health insurers and health plans specifying that women receive certain preventive services without copayment, coinsurance, or deductible. The guidelines, which go into effect in August 2012 with changes becoming effective for most new health plans on January 1, 2013, build on the ACA provisions to increase access to preventive services for all Americans. The new guidelines require full coverage for HIV screening and counseling for all sexually ac- tive women, human papillomavirus (HPV) testing, STI counseling, 8 Itis important to note that while some of the provisions of the Patient Protection and Affordable Care Act (ACA) apply to all health plans, certain requirements (e.g., coverage of preventive services without cost sharing) are not applicable to a grandfathered plan as long as the plan or insurance coverage remains a grandfathered plan. A grandfathered health plan is a group health plan or insurance coverage in which an individual was enrolled on March 23, 2010, the date the ACA was enacted. 9 Furthermore, an “essential benefits package” that is planned to go into effect in 2014 would require all qualified health benefits plans to offer at least the benefits in the package, which will include items and services in the following 10 categories: (1) ambulatory patient services, (2) emergency services, (3) hospitalization, (4) maternity and newborn care, (5) mental health and substance use disorder services, including behavioral health treatment, (6) prescription drugs, (7) rehabilitative and habilitative services and devices, (8) laboratory services, (9) preventive and wellness services and chronic disease management, and (10) pediatric services, including oral and vision care (KFF, 2011; H.R. 3590, SEC 1302).

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29 INTRODUCTION and FDA-approved contraceptive methods and counseling, among other services (HHS, 2011a). • Expansion of Care Capacity at Community Health Centers: Com- munity health centers (CHCs), including federally qualified health centers (FQHCs),10 are an important source of care for PLWHA who may be isolated from traditional forms of medical care (e.g., undocumented and recent immigrants,11 people living in rural areas), as well as people who are low income, uninsured, and members of racial and ethnic minority groups. To increase access to preventive care and primary health care, the ACA provides funding to increase the service capacity of CHCs/FQHCs from 20 million to 40 million patients by 2015 (McKay, 2011). As noted in the operational plans for the NHAS, federal agencies and their state, local, and community partners need to ensure that HIV health care providers and PLWHA are included in initiatives to improve quality of care and integration of care services as the ACA is implemented (ONAP, 2011b). The ACA will help to address several features of the current health system that restrict access to care and care coverage for PLWHA.12 This will occur by expanding access to Medicaid, Medicare (prescription drug coverage), and private insurance programs, as well as by increasing access to preventive services and bolstering support to CHCs. It is important to 10 Federally Qualified Health Centers (FQHCs) include health centers funded under Section 330 of the U.S. Public Health Service (PHS) Act; FQHC “look-alikes,” or FQHCLAs, that have been identified by the Health Resources and Services Administration and certified by the Centers for Medicare and Medicaid Services (CMS) as meeting the definition of “Health Center” under Section 330; and outpatient health programs or facilities operated by tribal organizations. 11 Some qualified immigrants are not eligible for Medicaid until they have been in the United States for 5 years (CMS, 2012). 12 While preparing this report, the committee was mindful that provisions of the ACA that would impact access to care for PLWHA may not be implemented as originally planned. How- ever, the indicators and data systems identified by the committee in this report to monitor the impact of the ACA on HIV care remain valid even if the ACA is not fully implemented. Indeed the committee’s charge was to identify indicators to gauge the impact on HIV care not only of the ACA but also of the NHAS, for which implementation plans developed by applicable federal agencies currently are underway. Furthermore, many states have already expanded access to health insurance for their residents in response to ACA provisions, and states may maintain these changes even in the absence of national-level reforms. For example, the ACA allowed states the option to begin phasing in Medicaid expansion to cover non-elderly indi- viduals with income up to 133 percent of the federal poverty level ( FPL) beginning in April 2010, and many states have done so. The committee’s recommended indicators could be used to monitor improvements in HIV care within states over time as a result of these changes, even if such changes do not occur nationally. The indicators are also applicable to state-specific policies, such as shifts to Medicaid managed care, and New York’s current Medicaid redesign, which will include a new payment structure.

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30 MONITORING HIV CARE IN THE UNITED STATES note that changes resulting from the ACA will not benefit all PLWHA—for example, undocumented immigrants who are ineligible for many key provi- sions of the legislation. The Ryan White HIV/AIDS Program is an example of an effective integrated model of care for PLWHA. Primary and specialty care as well as psychosocial services are coordinated within a single “medical home.” Therefore, the Ryan White HIV/AIDS Program model of care helps to overcome challenges posed by the fragmented health care system that may impede retention in care for many PLWHA (Gallant et al., 2011). Care for many PLWHA will likely shift from the Ryan White HIV/AIDS Program to Medicaid as the ACA expands Medicaid to cover adults who were previ- ously uninsured. However, the Ryan White HIV/AIDS Program and other safety net providers will continue to fill gaps in medical and social services not covered by Medicaid. The Ryan White HIV/AIDS Program also will continue to be an important source of care and supportive services for PLWHA who remain uninsured under the ACA (such as undocumented immigrants). The Role of Health Information Technology and Data System Integration When applied appropriately, health information technology (health IT) can help to improve health care quality, prevent medical errors, reduce health care costs, and increase administrative efficiencies (HHS, 2011c; IOM, 2001). The Health Information Technology for Economic and Clini- cal Health (HITECH) Act, a key component of the American Recovery and Reinvestment Act of 2009 (ARRA, P.L. 111-5) , has allowed HHS to estab- lish several programs to improve health care delivery through investment in health IT, such as electronic health records (EHRs) (HHS, 2011d). For example, incentive funds authorized under the ARRA are helping eligible primary care as well as medical and surgical specialists with high EHR implementation costs that have been an obstacle to their widespread use (Hogan and Kissam, 2010). The health IT infrastructure being established as a result of the HITECH Act is key to carrying out goals of the ACA to improve quality of care through expanded measurement and reporting, reduce costs and improve efficiency of care delivery and administrative processes, and improve access to care and coverage (Buntin et al., 2010). Although the government investment in health IT is encouraging, im- plementation has thus far occurred at a slow pace. For health IT to be used to its fullest capabilities to monitor HIV care, several barriers to adoption and utilization in settings that provide care and services to PLWHA have to be addressed. These include costs and staffing needed to implement and maintain IT applications, privacy and confidentiality concerns, and a vari- ety of other factors described in more detail later in this report. Most im-

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31 INTRODUCTION portantly, the benefits of health IT cannot fully be realized without system interoperability or an infrastructure that supports the secure exchange of health information across providers, including physician practices, insur- ance providers, hospitals, and other entities (Edwards et al., 2010).13 To a large extent, the health IT systems currently employed in clinician and provider offices capture patient information in different ways (e.g., using different terminology standards) and thus cannot “talk” to each other. The existence of heterogeneous HIV data systems makes understanding interoperability essential. The exchange of health information across care sites is especially important for PLWHA who may transition across pro- grams throughout the course of their illness (as previously described) and see different types of providers for the management of HIV and comorbid conditions. THE COMMITTEE’S APPROACH TO ITS CHARGE The committee reviewed information from a number of sources during the course of its deliberations, including the scientific literature, previous IOM reports, and presentations by experts invited to speak with the com- mittee on topics pertaining to its charge. As described in greater detail in the following chapters, the committee also reviewed existing HIV care indica- tors and measures of HIV care quality to inform its selection of core indi- cators. The committee requested information from individuals who work with various sources of data on HIV care and supportive services about the information collected to identify the best sources of data for estimating indicators. The committee reviewed data systems that are HIV specific (e.g., epidemiologic studies of PLWHA), as well as data systems that are not HIV specific (e.g., Medicaid, Medicare, private health insurance data systems) that include data relevant to monitoring HIV care. Consistent with the NHAS objective to increase access to care and im- prove health outcomes for PLWHA, the committee focused on identifying core indicators and data systems to track linkage and access to appropriate HIV care and related supportive services among diagnosed PLWHA. The committee also considered how indicators could be used to monitor HIV- related health disparities. Reducing the occurrence of new HIV infections, another NHAS objective, is critical to curbing the HIV epidemic in the United States. However, this report does not identify indicators and data systems to monitor reductions in new HIV infections because the committee interpreted its charge to apply to the population of PLWHA with diagnosed 13 In health care, interoperability refers to the ability of different information technology systems and software applications to communicate; to exchange data accurately, effectively, and consistently; and to use the information that has been exchanged (HHS, 2008).

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32 MONITORING HIV CARE IN THE UNITED STATES HIV infection. In addition, the committee chose to focus this report on adult PLWHA, although the core indicators for clinical HIV care and men- tal health and substance abuse could be applied to adolescents as well.14 As the committee was preparing this report, there was a concurrent ef- fort under way by HHS to identify domain areas from which standardized indicators can be identified to monitor federally funded HIV/AIDS preven- tion, treatment, and care services.15 The project was motivated by a need to develop a common set of metrics to streamline the collection of data to measure NHAS objectives and reduce reporting requirements for grantees of federally funded HIV/AIDS programs (Forsyth et al., 2011; Valdiserri and Forsyth, 2011). Because the aims of the HHS effort overlapped with the charge to the committee to identify core indicators to gauge the impact of the NHAS and ACA on HIV care, the committee deemed it necessary to include the HHS effort in its information gathering. HHS representatives who are familiar with the HHS effort were invited to one of the committee’s meetings to discuss the types and sources of indicators under consideration. The committee also received periodic updates on HHS’s progress over the course of the study. Providers of HIV care and supportive services are required to meet many reporting obligations related to compliance with federal grants, dis- ease surveillance, and other activities. These reporting obligations require substantial staff time and may constrain provider capacity to engage in other activities such as the provision of HIV care and supportive services (IOM, 2010, 2011b). Taking into account the ongoing effort by HHS to streamline data reporting requirements for HHS grantees, the committee made an effort to be parsimonious in its identification of core indicators to gauge the impact of the NHAS and ACA on improvements in HIV care. REPORT ORGANIZATION Chapter 2 of this report addresses the parts of the committee’s state- ment of task that pertain to data elements and core indicators related to continuous care and access to supportive services for PLWHA. The relative merits of each type of data are discussed, as well as whether the differences among data types (in particular, claims data and clinical data) encompass 14 Although new cases of HIV in children (i.e., individuals under age 13) continue to occur, their frequency has diminished substantially with the implementation of routine HIV screening of pregnant women and the provision of ART to HIV-infected pregnant women, which greatly reduces the risk of mother-to-child transmission (Branson et al., 2006; CDC, 2002). 15 As of January 24, 2012, these domain areas included HIV+ diagnosis; early HIV diagnosis; initial linkage to care; sustained engagement in care; initiation of antiretroviral treatment; viral load suppression; and housing (personal communication, Andrew Forsyth, Department of Health and Human Services, January 24, 2012).

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33 INTRODUCTION gaps in measures for HIV care. The chapter also presents the committee’s choice of core indicators related to continuous HIV care and access to supportive services and identifies and recommends the most critical data and indicators to gauge the impact of the NHAS and the ACA. Chapter 3 discusses sources of data for estimating the core indicators identified in Chapter 2, considers ways to maximize their usefulness, and recommends approaches for supplementing current data systems to gauge the impact of the NHAS and the ACA on HIV care. Chapter 3 also discusses similar data collection and standardization efforts that should be utilized, as well as how to regularly obtain data to capture the care experiences of PLWHA without substantial new investments. Chapter 4 discusses potential barriers to the collection of the data needed to estimate the core indicators recom- mended by the committee, including policy, reimbursement, and reporting issues that must be addressed to collect the necessary data. The chapter also considers how core indicator data can be collected without significantly increasing provider burden. Chapter 5 discusses ways in which health IT can be utilized and configured to improve the collection of HIV care data, as well as models and best practices in data system integration to make existing data systems that capture HIV care data interoperable. Chapter 6 describes how federal agencies can efficiently analyze indicators of HIV care and disseminate data to improve the quality of HIV care. Each chapter ends with the committee’s conclusions and recommendations pertaining to aspects of the statement of task discussed in that chapter. REFERENCES Ashman, J. J., R. Conviser, and M. B. Pounds. 2002. Associations between HIV-positive in- dividuals receipt of ancillary services and medical care receipt and retention. AIDS Care 14(Suppl 1):S109-S118. Bhavan, K. P., V. N. Kampalath, and E. T. Overton. 2008. The aging of the HIV epidemic. Current HIV/AIDS Reports 5:150-158. Blair, J. M., A. D. McNaghten, E. L. Frazier, J. Skarbinski, P. Huang, and J. D. Heffelfinger. 2011. Clincial and behavioral characteristics of adults receiving care for HIV infection— Medical Monitoring Project, United States, 2007. Morbidity and Mortality Weekly Report 60(20):1-17. Bogart, L. M., G. Wagner, F. H. Galvan, and D. Banks. 2010. Conspiracy beliefs about HIV are related to antiretroviral treatment nonadherence among African American men with HIV. Journal of Acquired Immune Deficiency Syndrome 53(5):648-655. Branson, B. M., H. H. Handsfield, M. A. Lampe, R. S. Janssen, A. W. Taylor, S. B. Lyss, and J. E. Clark. 2006. Revised recommendations for HIV testing of adults, adolescents, and pregnant women in health-care settings. Morbidity and Mortality Weekly Report 55(RR14):1-17. Buntin, M. B., S. H. Jain, and D. Blumenthal. 2010. Health information technology: Laying the infrastructure for national health reform. Health Affairs 29(6):1214-1219.

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35 INTRODUCTION Gardner, E. M., K. H. Hullsiek, E. E. Telzak, S. Sharma, G. Peng, W. J. Burman, R. D. MacArthur, M. Chesney, G. Friedland, S. B. Mannheimer, and T. Beirn. 2010. Antiret- roviral medication adherence and class-specific resistance in a large prospective clinical trial. AIDS 24(3):395-403. Gardner, E. M., M. P. McLees, J. F. Steiner, C. del Rio, and W. J. Burman. 2011. The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection. Clinical Infectious Diseases 52:793-800. Granich, R. M., C. F. Gilks, C. Dye, K. M. De Cock, and B. G. Williams. 2009. Universal voluntary HIV testing with immediate antiretroviral therapy as a strategy for elimination of HIV transmission: A mathematical model. Lancet 373(9657):48-57. HHS (Department of Health and Human Services). 2008. The National Alliance for Health Information Technology report to the Office of the National Coordinator for Health Information Technology on Defining Key Health Information Technology Terms. http:// cdm266901.cdmhost.com/cdm/singleitem/collection/p266901coll4/id/2086/rec/8 (ac- cessed May 23, 2012). HHS. 2011a. Affordable Care Act Ensures Women Receive Preventive Services at No Addi- tional Cost. News release. http://www.hhs.gov/news/press/2011pres/08/20110801b.html (accessed February 29, 2012). HHS. 2011b. How the Affordable Care Act Helps People Living with HIV/AIDS: 2011 and Beyond. http://www.healthcare.gov/news/factsheets/2011/11/hiv-aids11092011a.html (accessed May 22, 2012). HHS. 2011c. Health Information Technology: Understanding HIPAA Privacy. http://www. hhs.gov/ocr/privacy/hipaa/understanding/special/healthit/index.html (accessed February 29, 2012). HHS. 2011d. HITECH Programs. http://healthit.hhs.gov/portal/server.pt/community/ healthit_hhs_gov__hitech_programs/1487 (accessed February 29, 2012). Hogan, S. O., and S. M. Kissam. 2010. Measuring meaningful use. Health Affairs 29(4): 601-606. Horberg, M. A., J. A. Aberg, L. W. Cheever, P. Renner, E. O’Brien Kaleba, and S. M. Asch. 2010. Development of national and multiagency HIV care quality measures. Clinical Infectious Diseases 51(6):732-738. HRSA (Health Resources and Services Administration). 2010. Letter to Ryan White HIV/ AIDS Program Grantees. November 23. http://hab.hrsa.gov/manageyourgrant/pinspals/ adaptroopltr1011.pdf (accessed February 29, 2012). IOM (Institute of Medicine). 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press. IOM. 2005. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. Washington, DC: The National Academies Press. IOM. 2010. HIV Screening and Access to Care: Exploring Barriers and Facilitators to Ex- panded HIV Testing. Washington, DC: The National Academies Press. IOM. 2011a. Clinical Preventive Services for Women: Closing the Gaps. Washington, DC: The National Academies Press. IOM. 2011b. HIV Screening and Access to Care: Exploring the Impact of Policies on Access to and Provision of HIV Care. Washington, DC: The National Academies Press. Jha, A. K., D. Doolan, D. Grandt, T. Scott, and D. W. Bates. 2008. The use of health in- formation technology in seven nations. International Journal of Medical Informatics 77(12):848-854. Justice, A. C. 2010. HIV and aging: Time for a new paradigm. Current HIV/AIDS Reports 7(2):69-76.

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36 MONITORING HIV CARE IN THE UNITED STATES KFF (Kaiser Family Foundation). 2006. The Role of Part D for People with HIV/AIDS: Cover- age and Costs of Antiretrovirals Under Medicare Drug Plans. http://www.kff.org/hivaids/ upload/7548.pdf (accessed January 18, 2012). KFF. 2011. Focus on Health Reform: Summary of the New Health Reform Law. Publication number 8061. McKay, E. G. 2011. HIV and Health Care Reform: Implications for Safety Net Clinics. http:// www.regionalprimarycare.org/spotlight-on-health-reform/documents/PolicyandPractice- HealthReformHIVClinics2-18-11.pdf (accessed February 29, 2012). Moore, R.D. 2011. Epidemiology of HIV infection in the United States: Implications for link- age and retention in care. Clinical Infectious Diseases 52(Suppl 2):S208-S213. Mugavero, M. J., W. E. Norton, and M. S. Saag. 2011. Health care system and policy factors influencing engagement in HIV medical care: Piecing together the fragments of a frac- tured health care delivery system. Clinical Infectious Diseases 52:S238-S246. NASTAD (National Alliance of State and Territorial AIDS Directors). 2010. HIV/Hepatitis Health Reform Watch. Volume 3, August 9. http://www.nastad.org/Docs/Public/ InFocus/2010811_Health%20Reform%20Watch%20Volume%203.pdf (accessed Febru- ary 29, 2012). NASTAD. 2011. National ADAP Monitoring Project Annual Report. May. http://www.nastad. org/Files/020035_2011%20NASTAD%20National%20ADAP%20Monitoring%20 Project%20Annual%20Report.pdf (accessed February 29, 2012). ONAP (White House Office of National AIDS Policy). 2010. National HIV/AIDS Strategy for the United States. http://www.whitehouse.gov/sites/default/files/uploads/NHAS.pdf (accessed February 29, 2012). ONAP. 2011a. About ONAP. http://www.whitehouse.gov/administration/eop/onap/about (ac- cessed February 29, 2012). ONAP. 2011b. Implementing the National HIV/AIDS Strategy: Overview of Agency Op- erational Plans. http://aids.gov/federal-resources/policies/national-hiv-aids-strategy/nhas- operational-plan-overview.pdf (accessed February 29, 2012). Parashar, S., A. K. Palmer, N. O’Brien, K. Chan, A. Shen, S. Coulter, J. S. Montaner, and R. S. Hogg. 2011. Sticking to it: The effect of maximally assisted therapy on antiretroviral treatment adherence among individuals living with HIV who are unstably housed. AIDS Behavior 15(8):1612-1622. Prejean, J., R. Song, A. Hernandez, R. Ziebell, T. Green, F. Walker, L. S. Lin, Q. An, J. Mermin, A. Lansky, and H. I. Hall. 2011. Estimated HIV incidence in the United States, 2006-2009. PlosOne 6(8):e17502. Robertson, M. J., R. A. Clark, E. D. Charlebois, J. Tulsky, H. L. Long, D. R. Bangsberg, and A. R. Moss. 2004. HIV seroprevalence among homeless and marginally housed adults in San Francisco. American Journal of Public Health 94(7):1207-1217. Sethi, A. K., D. D. Celentano, S. J. Gange, R. D. Moore, and J. E. Gallant. 2003. Association between adherence to antiretroviral therapy and human immunodeficiency virus drug resistance. Clinical Infectious Diseases 37(8):1112-1118. Shiels, M. S., R. M. Pfeiffer, M. H. Gail, H. I. Hall, J. M. Li, A. K. Chaturvedi, K. Bhatia, T. S. Uldrick, R. Yarchoan, J. J. Goedert, and E. A. Engels. 2011. Cancer burden in the HIV-infected population in the United States. Journal of the National Cancer Institute 103(9):753-762. Sikkema, K. J., M. H. Watt, A. S. Drabkin, C. S. Meade, N. B. Hansen, and B. W. Pence. 2010. Mental health treatment to reduce HIV transmission risk behavior: A positive prevention model. AIDS Behavior 14(2):252-262.

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37 INTRODUCTION USPSTF (U.S. Preventive Services Task Force). 2010. USPSTF A and B Recommendations. List of Preventive Services that Have a Rating of A or B that Are Relevant for Implementing the Affordable Care Act. http://www.uspreventiveservicestaskforce.org/uspstf/uspsabrecs. htm (accessed February 29, 2012). Valdiserri, R., and A. Forsyth. 2011. DHHS/OHAP Consultation on HIV/AIDS Core In- dicators, Data Streamlining, and Federal Reporting Requirements. Washington, DC, September 19. Weaver, M. R., C. J. Conover, R. J. Proescholdbell, P. S. Arno, A. Ang, K. K. Uldall, and S. L. Ettner. 2009. Cost-effectiveness analysis of integrated care for people with HIV, chronic mental illness and substance abuse disorders. Journal of Mental Health Policy and Economics 12(1):33-46.

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