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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.
OCR for page 34
34 MONITORING HIV CARE IN THE UNITED STATES
Cassidy, A. 2010. Preventive Services Without Cost Sharing. New Private Health Plans Must
Pay for Screenings and Other Preventive Services. Will the Benefits Outweigh the Costs?
http://www.healthaffairs.org/healthpolicybriefs/brief.php?brief_id=37 (accessed February
29, 2012).
CBO (Congressional Budget Office). 2011. CBO’s Analysis of the Major Health Care Legisla-
tion Enacted in March 2010. http://www.cbo.gov/publication/25155 (accessed February
29, 2012).
CDC (Centers for Disease Control and Prevention). 2002. HIV testing among pregnant
women—United States and Canada, 1998-2001. Morbidity and Mortality Weekly Report
51(45):1013-1016.
CDC. 2008. New Estimates of U.S. HIV Prevalence, 2006. CDC Fact Sheet. October.
CDC. 2011a. ACIP Recommendations. http://www.cdc.gov/vaccines/pubs/ACIP-list.htm (ac-
cessed February 29, 2012).
CDC. 2011b. HIV surveillance—United States, 1981-2008. Morbidity and Mortality Weekly
Report 60(21):689-693.
CDC. 2011c. Vital signs: HIV prevention through care and treatment—United States. Morbid-
ity and Mortality Weekly Report 60(47):1618-1623.
Christopoulos, K. A., M. Das, and G. N. Colfax. 2011. Linkage and retention in HIV care
among men who have sex with men in the United States. Clinical Infectious Diseases
52(Suppl 2): S214-S222.
Chu, C., and P. Selwyn. 2011. An epidemic in evolution: The need for new models of HIV care
in the chronic disease era. Journal of Urban Health: Bulletin of the New York Academy
of Medicine 88(3):556-566.
CMS (Centers for Medicare & Medicaid Services). 2012. Closing the Coverage Gap—
Medicare Prescription Drugs Are Becoming More Affordable. http://medicare.gov/pub-
lications/pubs/pdf/11493.pdf (accessed February 29, 2012).
Cohen, M. S., Y. Q. Chen, M. McCauley, T. Gamble, M. C. Hosseinipour, N. Kumarasamy,
J. G. Hakim, J. Kumwenda, B. Grinsztein, J. H. S. Pilotto, S. V. Godbole, S. Mehendale,
S. Charjvalertsak, B. R. Santos, K. H. Mayer, I. F. Hoffman, S. H. Eshelman, E. Piwowar-
Manning, L. Wang, J. Makhema, L. A. Mills, G. de Bruyn, I. Sanne, J. Eron, J. Gallant,
D. Havlir, S. Swindells, H. Ribaudo, V. Elharrar, D. Burns, T. E. Taha, K. Nielsen-Saines,
D. Celentano, M. Essex, and T. R. Fleming. 2011. Prevention of HIV-1 infection with
early antiretroviral therapy. New England Journal of Medicine 365:493-505.
Edwards, A., I. Hollin, J. Barry, and S. Kachnowski. 2010. Barriers to cross-institutional
health information exchange: A literature review. Journal of Healthcare Information
Management 24(3):22-34.
Effros, R. B., C. V. Fletcher, K. Gebo, J. B. Halter, W. R. Hazzard, F. M. Horne, R. E. Huebner,
E. N. Janoff, A. C. Justice, D. Kuritzkes, S. G. Nayfield, S. F. Plaeger, K. E. Schmader,
J. R. Ashworth, C. Campanelli, C. P. Clayton, B. Rada, N. F. Woolard, and K. P. High.
2008. Aging and infectious diseases: Workshop on HIV infection and aging: What is
known and future research directions. Clinical Infectious Diseases 47(4):542-553.
Fleishman, J., and K. Gebo. 2012. HIV Research Network. Report to the committee. January 27.
Forsyth, A., A. Lansky, and R. Wolitski. 2011. Achieving the Vision of the NHAS: An Up-
date of ECHPP and 12 Cities Activities. PowerPoint presentation before the committee.
Washington, DC, September 1.
Gallant, J. E., A. A. Adimora, J. K. Carmichael, M. Horberg, M. Kitahata, E. B. Quinlivan,
J. L. Raper, P. Selwyn, and S. B. Williams. 2011. Essential components of effective HIV
care: A policy paper of the HIV Medicine Association of the Infectious Diseases Society
of America and the Ryan White Medical Providers Coalition. Clinical Infectious Diseases
53(11):1043-1050.
OCR for page 35
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.
OCR for page 36
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.
OCR for page 37
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.
OCR for page 38
