Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter.
Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.
Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.
OCR for page 1
Summary1
BACKGROUND
The number of people living with HIV/AIDS (PLWHA) in the United
States is growing each year largely due both to advances in treatment that
allow HIV-infected individuals to live longer and healthier lives and to a
steady number of new HIV infections each year. The U.S. Centers for Dis-
ease Control and Prevention (CDC) estimates that there were 1.2 million
people living with HIV infection in the United States at the end of 2008, the
most recent year for which national prevalence data are available. As a dis-
ease that disproportionately affects populations who already have a range
of care and supportive service needs, now more than ever HIV requires
continuous and coordinated quality care. Furthermore, there continue to
be challenges to curbing the toll of the epidemic. Each year, approximately
16,000 individuals die from AIDS despite overall improvements in survival,
and 50,000 individuals become newly infected with HIV. In 2011, the CDC
estimated that about three in four people living with diagnosed HIV infec-
tion are linked to care within 3 to 4 months of diagnosis and that only half
are retained in ongoing care. Treatment with antiretroviral therapy (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 as well as reduced risk of HIV transmission. Yet,
only 19–28 percent of PLWHA are virally suppressed.
1 This
summary does not include references. Citations to support text, conclusions, and
recommendations made herein are given in the body of the report.
1
OCR for page 2
2 MONITORING HIV CARE IN THE UNITED STATES
The National HIV/AIDS Strategy and the Patient
Protection and Affordable Care Act
In the context of the continuing challenges posed by HIV, the White
House Office of National AIDS Policy (ONAP) released a National HIV/
AIDS Strategy (NHAS) for the United States in July 2010. The primary
goals of the NHAS are to
• reduce HIV incidence;
• ncrease access to care and optimize health outcomes for PLWHA;
i
and
• reduce HIV-related health disparities.
Federally run HIV programs traditionally have been administered in
a siloed fashion due to differences in the missions of the agencies within
which they originate or in funding stream requirements. Meeting the
NHAS objectives will require increased synergy of HIV programs across
federal agencies, and among federal agencies, states, and other jurisdic-
tions. As such, the NHAS includes a fourth objective to increase coordi-
nation of HIV program activities across levels of government. Subsumed
within this objective is the development of improved mechanisms to moni-
tor progress in achieving the NHAS goals. In the agency operational plans
for the NHAS, this Institute of Medicine (IOM) report is named as one
of the activities that ONAP is undertaking to address existing gaps in the
collection, analysis, and integration of data on the care and treatment
experiences of PLWHA.
The NHAS is intended to build upon the Patient Protection and Afford-
able Care Act (ACA), which—if implemented as originally planned—is ex-
pected to bring millions of uninsured individuals, including many PLWHA,
into the health care system. Examples of provisions of the ACA that may
increase access to care for PLWHA include changes in eligibility require-
ments for public (e.g., Medicaid) and private health insurance, reduced
out-of-pocket costs for Medicare Part D prescription drugs, expansion of
coverage for preventive health services, and increased care capacity in com-
munity health centers.
CHARGE TO THE COMMITTEE
ONAP requested that the IOM convene a committee to identify critical
data and indicators related to continuous HIV care and access to supportive
services, as well as to monitor the impact of the NHAS and the ACA on
improvements in HIV care. In addition, the committee was tasked with
identifying public and private data systems that capture the data needed to
OCR for page 3
3
SUMMARY
estimate these indicators. The committee was also asked to address a series
of specific questions related to the collection, analysis, and dissemination of
such data (Box S-1). The IOM convened a committee of 17 members with
expertise in HIV clinical care and supportive services, health policy, data
collection and analysis, informatics, and other relevant areas to respond to
this charge.
COMMITTEE’S APPROACH TO ITS CHARGE
NHAS targets for increasing access to care and improving health out-
comes for PLWHA and for reducing HIV-related health disparities by 2015
(Box S-2) provided the basis for several of the indicators recommended
by the committee.2 The committee also reviewed existing indicators of
HIV care and measures of HIV care quality. These include Healthy People
2020 objectives and President’s Emergency Plan for AIDS Relief (PEPFAR)
indicators that pertain to HIV care and supportive services, as well as
performance measures for HIV care that were endorsed by the National
Quality Forum, an organization that sets national consensus standards of
performance in health care. The committee also reviewed current guidelines
for HIV treatment. The committee identified indicators linked to bench-
marks along the continuum of HIV care, from diagnosis through virologic
suppression (Figure S-1).
The committee compiled a list of 32 public and private data systems
and data collection agencies, including ones highlighted in the project pro-
posal from ONAP and others identified by the committee as potentially
important sources of information on HIV care and supportive services.
The committee reviewed both HIV-specific data systems and data collec-
tion activities, such as epidemiologic studies of PLWHA and Ryan White
HIV/AIDS Program data, and those that are not HIV specific but capture
information on care received by PLWHA, such as Medicaid and Medi-
care claims data. The committee requested information from individuals
who are familiar with the data systems and data collection activities in
the areas of HIV testing and linkage to care, clinical care, access to care,
treatment and adherence, financial security, need for supportive services,
demographics, risk behavior assessment, and patient experience with care.
The committee then compared the compiled information against the data
elements needed to estimate the indicators to identify the best sources of
2 The committee interpreted its charge as focusing on the population of people living with
HIV/AIDS (PLWHA) who have been diagnosed with HIV. Therefore, the committee did not
identify indicators to monitor the National HIV/AIDS Strategy (NHAS) objective related to
reducing the occurrence of new HIV infections, although some of the indicators promote
reduced HIV transmission as well as improved health outcomes for PLWHA.
OCR for page 4
4 MONITORING HIV CARE IN THE UNITED STATES
BOX S-1
Statement of Task
The White House Office of National AIDS Policy has requested that the Insti-
tute of Medicine (IOM) convene a committee of experts to assess available public
and private data systems that capture information about HIV care to investigate
ways to maximize their usefulness and recommend approaches for supplementing
current data sources and to identify and provide recommendations for the most
critical data and indicators to gauge the impact of the National HIV/AIDS Strategy
and the Patient Protection and Affordable Care Act in improving HIV/AIDS care.
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 indica-
tors related to continuous care and access to support services, such as
housing, for people living with HIV?
a. What data collection items need to be revised or reconsidered in exist-
ing 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 mea-
sures for HIV care?
2. What similar data collection or standardization efforts are currently 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 ex-
periences 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 dissemi-
nate 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 or configured in order to improve the collection of
comprehensive data describing the care experiences of people living
with HIV?
OCR for page 5
5
SUMMARY
BOX S-2
National HIV/AIDS Strategy Targets
Targets for Increasing Access to Care and Improving Health Outcomes for
People Living with HIV
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.
• increase the proportion of Ryan White HIV/AIDS Program clients who
are 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.
Targets for Reducing HIV-Related Health Disparities and Inequities
By 2015,
• increase the proportion of HIV diagnosed gay and bisexual men with
undetectable viral load by 20 percent.
• increase the proportion of HIV-diagnosed Black Americans with unde-
tectable viral load by 20 percent.
• ncrease the proportion of HIV diagnosed Latinos with undetectable viral
i
load by 20 percent.
data for gauging the impact of the NHAS and ACA on improvements in
HIV care.
The committee’s information gathering for the remaining aspects of
its charge consisted of presentations before the committee during its open
sessions and review of the research literature.
COMMITTEE’S RECOMMENDATIONS
Core Indicators Related to Continuous HIV Care
and Access to Supportive Services
The committee concluded that the primary challenges to optimal health
outcomes for PLWHA include late diagnosis, delayed linkage to care for
HIV, poor retention in care, delayed initiation of ART, and poor adherence
to ART (i.e., discontinuing or intermittent use of ART), as well as untreated
non-HIV comorbidities (e.g., substance abuse, hepatitis C), and unmet basic
needs (e.g., housing, food, or transportation assistance needs). The commit-
OCR for page 6
6
Proportion in continuous
care (2 or more visits in
preceding 12 months at
least 3 months apart)
Proportion with CD4+ cell Proportion linked to Proportion in continuous
count >200 and without a care for HIV within 3 care for 12 or more months
clinical diagnosis of AIDS months of diagnosis with CD4+ cell count ≥350
Linkage Engagement/ Engagement/
Retention Retention
Proportion with mental health disorder Proportion with a Proportion on
In the Past Since
referred for mental health services who measured CD4+ cell ART for 12 or
12 Months Diagnosis receive these services within 60 days count <500 who are more months
not on ART who have an
undetectable
Proportion who Proportion with substance use disorder
Proportion screened
viral load
Proportion with HIV-
received 2 or more referred for substance abuse services who
for tuberculosis
associated
CD4 tests receive these services within 60 days
All-cause
nephropathy, hepatitis
Proportion screened mortality rate
B (when treatment is
Proportion with an unmet need for
for hepatitis B indicted), or active
Proportion who • housing
received 2 or more tuberculosis who are
• food or nutrition
not on ART
viral load tests • transportation
Proportion immunized
for hepatitis B
Proportion of HIV-
(if needed)
Proportion screened Proportion screened for mental health disorders
infected pregnant
for chlamydia, at least once in preceding 12 months
women who are not
gonorrhea, and on ART
Proportion immunized
syphilis
for pneumococcal Proportion screened for substance use
pneumonia disorders at least once in preceding 12 months
Proportion screened
for hepatitis C
Proportion assessed for need for
Proportion who
• housing
received drug
Proportion immunized • food or nutrition
resistance testing
for influenza • transportation
prior to ART initiation
FIGURE S-1 Continuum of HIV care arrow mapped to indicators of HIV care and supportive services.
NOTE: Indicators in bold text correspond with the committee’s recommended core indicators, while the indicators in italics cor-
respond with the additional indicators. More information on the committee’s selection of both core and additional indicators can
be found in Chapter 2.
OCR for page 7
7
SUMMARY
tee identified a set of core indicators that can be used to measure the degree
to which these challenges are being addressed across the continuum of HIV
care and to monitor the impact of the NHAS and ACA on improvements
in HIV care (Table S-1 provides the committee’s rationale for each of the
core indicators).
Recommendation 2-1. The Department of Health and Human Services
should use the following core indicators to assess the impact of the
National HIV/AIDS Strategy and the Patient Protection and Afford-
able Care Act on improving HIV/AIDS care and access to supportive
services for individuals with HIV:
Core Indicators for Clinical HIV Care
roportion of people newly diagnosed with HIV with a CD4+ cell
P
count >200 cells/mm3 and without a clinical diagnosis of AIDS
roportion of people newly diagnosed with HIV who are linked to
P
clinical care for HIV within 3 months of diagnosis
roportion of people with diagnosed HIV infection who are in
P
continuous care (two or more visits for routine HIV medical care
in the preceding 12 months at least 3 months apart)
roportion of people with diagnosed HIV infection who received
P
two or more CD4 tests in the preceding 12 months
roportion of people with diagnosed HIV infection who received
P
two or more viral load tests in the preceding 12 months
roportion of people with diagnosed HIV infection in continuous
P
care for 12 or more months and with a CD4+ cell count ≥350 cells/
mm3
roportion of people with diagnosed HIV infection and a measured
P
CD4+ cell count <500 cells/mm3 who are not on ART
roportion of people with diagnosed HIV infection who have been
P
on ART for 12 or more months and have a viral load below the
level of detection
ll-cause mortality rate among people diagnosed with HIV
A
infection
OCR for page 8
8 MONITORING HIV CARE IN THE UNITED STATES
Core Indicators for Mental Health, Substance Abuse, and Supportive
Services3
roportion of people with diagnosed HIV infection and mental
P
health disorder who are referred for mental health services and
receive these services within 60 days4
roportion of people with diagnosed HIV infection and substance
P
use disorder who are referred for substance abuse services and
receive these services within 60 days5
roportion of people with diagnosed HIV infection who were
P
homeless or temporarily or unstably housed at least once in the
preceding 12 months6
roportion of people with diagnosed HIV infection who experi-
P
enced food or nutrition insecurity at least once in the preceding 12
months7
3 Asdiscussed in Chapter 2, the committee found that the indicators for supportive services
may be particularly difficult to measure. However, there is evidence from research that address-
ing need for housing, food security, and other supportive services is effective for retention in
care and improving health outcomes among people with HIV. In addition, the committee was
specifically asked to address core indicators relating to “access to support services, such as
housing,” as well as those relating to continuous care. The fact that indicators for supportive
services may be difficult to estimate did not preclude the committee from including them as
core indictors.
4 Receipt of care within 30 days would reflect optimal care, but 60 days is more realistic
given the current limited capacity of many providers to see new patients within a shorter time
frame. Urgent cases should be seen as soon as possible.
5 See footnote 4 above.
6 The U.S. Department of Housing and Urban Development’s Homeless Management Infor-
mation System (HMIS) Data Standards provide guidance for classifying housing status in four
categories: literally homeless (e.g., lack a regular nighttime residence, staying in an emergency
shelter), following the McKinney-Vento Homeless Assistance Act (42 U.S.C. 11302, Sec. 103)
definition of homelessness, as amended by the Homeless Emergency Assistance and Rapid
Transition to Housing (HEARTH) Act of 2009 (P.L. 111-22, div. B, Sec. 1003); imminently
losing housing (e.g., being evicted or being discharged from an institution with no housing
options identified); unstably housed and at-risk of losing housing (e.g., temporarily doubled up
with others, moving frequently for economic reasons); and stably housed (http://www.hudhre.
info/documents/FinalHMISDataStandards_March2010.pdf, accessed March 12, 2012).
7 According to the U.S. Department of Agriculture, households with high food security have
“no reported indications of food-access problems or limitations”; households with marginal
food security have “one or two reported indications—typically of anxiety over food suf-
ficiency or shortage of food in the house [with] little or no indication of changes in diets or
food intake”; households with low food security have “reports of reduced quality, variety, or
desirability of diet [with] little or no indications of reduced food intake”; and households with
very low food security have “reports of multiple indications of disrupted eating patterns and
reduced food intake.” The lower two levels indicate food insecurity (http://www.ers.usda.gov/
briefing/foodsecurity/labels.htm#cnstat, accessed March 12, 2012).
OCR for page 9
9
SUMMARY
roportion of people with diagnosed HIV infection who had an un-
P
met need for transportation services to facilitate access to medical
care and related services at least once in the preceding 12 months
In addition to the core indicators, the committee identified a set of
additional indicators based on more granular process measures to provide
a comprehensive assessment of the quality of HIV care. These additional
indicators are included in Figure S-1 and discussed in detail in Chapter 2
of the report.
Demographic data on PLWHA have to be collected to monitor the im-
pact of the NHAS and ACA on improvements in HIV-related health dispari-
ties. The committee found that many crucial data elements, such as gender
identity, sexual orientation, sexual risk behaviors, geographic marker of
residence, income, primary means of reimbursement for medical services,
and level of acculturation as reflected in primary language are not routinely
collected in many of the federal data systems that it reviewed. Data on race
and ethnicity often are not collected with a sufficient level of detail to make
nuanced distinctions among the health needs of different racial and ethnic
groups. On October 31, 2011, the U.S. Department of Health and Human
Services (HHS) issued new guidance on minimum standards for collection
of data on race, ethnicity, sex, primary language, and disability status in
national population health surveys that are sponsored or conducted by
HHS. The guidance mandates the collection of more granular data on race
and ethnicity, as well as data on “biologic sex” and English proficiency as
a measure of primary language. HHS is also developing a plan to integrate
the collection of data on sexual orientation and gender identity into HHS
national surveys, and to collect data on socioeconomic status.
Recommendation 2-2. The Department of Health and Services and
the Office of Management and Budget should continue to expand the
demographic data elements to be captured by federal data systems rel-
evant to HIV care to permit calculation of the indicators for subgroups
of the population of people with diagnosed HIV infection, including,
but not limited to, the following:
Age
Race
Ethnicity
Sex (assigned at birth)
Gender identity (e.g., male, female, transgender [male-to-female,
female-to-male], bigender, gender queer)
OCR for page 10
TABLE S-1 Core Indicators for Clinical HIV Care and Mental Health, Substance Abuse, and Supportive Services,
10
with Rationale
Core Indicators for HIV Clinical Care
Proportion of people newly diagnosed with HIV with a CD4+ cell count >200 cells/mm3 and without a clinical diagnosis of AIDS
Rationale: Improve health outcomes by reducing the number of people living with HIV/AIDS (PLWHA) with late diagnosis.
Proportion of people newly diagnosed with HIV who are linked to clinical care for HIV within 3 months of diagnosis
Rationale: Timely linkage to care improves individual health outcomes and reduces transmission of the virus to others.
Proportion of people with diagnosed HIV infection who are in continuous care (two or more visits for routine HIV medical care in the preceding
12 months at least 3 months apart)
Rationale: Continuous HIV care results in better outcomes, including decreased mortality, and reduced transmission of the virus to others.
Proportion of people with diagnosed HIV infection who received two or more CD4 tests in the preceding 12 months
Rationale: Regular CD4 testing permits providers to monitor individuals’ immune function, determine when to start antiretroviral therapy (ART),
and assess the need for prophylaxis for opportunistic infections.
Proportion of people with diagnosed HIV infection who received two or more viral load tests in the preceding 12 months
Rationale: Regular viral load (plasma HIV RNA) testing is important for monitoring clinical progression of the disease and therapeutic response
in individuals on ART.
Proportion of people with diagnosed HIV infection in continuous care for 12 or more months and with a CD4+ cell count ≥350 cells/mm3
Rationale: Achieving and maintaining a CD4+ cell count ≥350 cells/mm3 reduces the risk of complicating opportunistic infections and cancers.
Proportion of people with diagnosed HIV infection and a measured CD4+ cell count <500 cells/mm3 who are not on ART*
Rationale: Appropriate initiation of ART improves individual health outcomes and reduces transmission of the virus to others.
Proportion of people with diagnosed HIV infection who have been on ART for 12 or more months and have a viral load below the level of
detection
Rationale: The goal of ART is durable virologic suppression, which improves health outcomes and reduces transmission of the virus.
OCR for page 11
All-cause mortality rate among people diagnosed with HIV infection*
Rationale: Mortality rate is the ultimate outcome measure for people diagnosed with HIV infection. Mortality among PLWHA should be inversely
related to the quality of overall care delivered.
Core Indicators for Mental Health, Substance Abuse, and Supportive Services
Proportion of people with diagnosed HIV infection and mental health disorder who are referred for mental health services and receive these
services within 60 days**
Rationale: Untreated mental health disorders can negatively affect maintenance in care, adherence to treatment, and health outcomes for PLWHA
and may increase the risk of transmitting the virus to others.
Proportion of people with diagnosed HIV infection and substance use disorder who are referred for substance abuse services and receive these
services within 60 days**
Rationale: Untreated substance use disorders can negatively affect maintenance in care, adherence to treatment, and health outcomes for PLWHA
and may increase the risk of transmitting the virus to others.
Proportion of people with diagnosed HIV infection who were homeless or temporarily or unstably housed at least once in the preceding 12
months*
Rationale: Homelessness and housing instability negatively affect maintenance in care, adherence to treatment, and health outcomes for PLWHA
and may increase the risk of transmitting the virus to others.
Proportion of people with diagnosed HIV infection who experienced food or nutrition insecurity at least once in the preceding 12 months*
Rationale: Food insecurity affects maintenance in care, adherence to treatment, and health outcomes for PLWHA and may increase the risk of
transmitting the virus to others. Poor nutrition affects absorption of medications and can contribute to diet-sensitive comorbidities.
Proportion of people with diagnosed HIV infection who had an unmet need for transportation services to facilitate access to medical care and
related services at least once in the preceding 12 months*
Rationale: Unmet need for transportation to access HIV health care and related services negatively affects treatment access, service utilization,
and health outcomes for PLWHA and may increase the risk of transmitting the virus to others.
*In contrast to the other indicators, the estimates for these indicators should decrease with improved access to care and supportive services.
**Receipt of care within 30 days would reflect optimal care, but 60 days is more realistic given the current limited capacity of many providers to
see new patients within a shorter time frame. Urgent cases should be seen as soon as possible.
11
OCR for page 12
12 MONITORING HIV CARE IN THE UNITED STATES
Sexual orientation (e.g., heterosexual, homosexual, bisexual)
Current geographic marker of residence (e.g., current address, zip
code, partial zip code, census block)
Income or poverty level
Primary means of reimbursement for medical services (including
Medicaid, Medicare, Ryan White HIV/AIDS Program, private in-
surance or health maintenance organization, no coverage)
In addition, HHS should, to the extent practicable, extend its expanded
data collection standards beyond national population-based health
surveys to all HHS-sponsored data collection activities.
Sources of Data on HIV Care to Assess Core
Indicators and Access to Supportive Services
Data on HIV care and supportive services are currently being collected
by a number of public and private data systems. Although no single data
system on its own provides all of the data needed to estimate the indica-
tors recommended by the committee (listed above), these data systems as
a whole are collecting relevant information that can serve as a collective
platform for evaluating access to continuous and high-quality care in all
populations of PLWHA. The committee identified 12 data systems in par-
ticular that collect data of use for estimating the core indicators to monitor
progress toward meeting the goals of the NHAS and ACA:
National HIV Surveillance System (CDC)
Medical Monitoring Project (CDC)
Ryan White Services Report (Health Resources and Services Adminis-
tration [HRSA])
Ryan White AIDS Drug Assistance Program Reports (HRSA)
Medicaid Statistical Information System (Centers for Medicare and
Medicaid Services [CMS])
Chronic Condition Data Warehouse (CMS)
North American AIDS Cohort Collaboration on Research and Design
CFAR Network of Integrated Clinical Systems
HIV Research Network
Clinical Case Registry: HIV (Department of Veterans Affairs)
OCR for page 13
13
SUMMARY
Kaiser Permanente
National Vital Statistics System
The committee identified two additional data systems that provide in-
formation of use in tracking the impact of the NHAS and ACA on care for
two small but important subpopulations of PLWHA (American Indians and
Alaskan Natives; federal prisoners), and a third that provides information
relevant to housing assistance and other supportive services for PLWHA:
Resource and Patient Management System (Indian Health Service)
Bureau of Prisons Electronic Medical Record
Housing Opportunities for Persons with AIDS (U.S. Department of
Housing and Urban Development)
The committee’s review showed that each data system has limitations.
For example, few contain all of the data elements needed to estimate all of
the indicators recommended by the committee, especially those for mental
health, substance abuse, and supportive services (housing, food security,
transportation). In addition, most of the data systems are not fully repre-
sentative of the population of PLWHA in the United States. In many cases
(e.g., Ryan White HIV/AIDS Program, Medicaid Statistical Information
System [MSIS], Chronic Condition Data Warehouse [CCW], Clinical Case
Registry: HIV), the population represented in the data system is defined
by program eligibility and cannot be expanded. Similarly, the purposes
for which the data systems were designed preclude expansion of the data
elements they collect to include all of those needed to estimate all of the
indicators identified by the committee. Modest changes in individual data
systems, however, could improve the usefulness of their data for tracking
changes in HIV care and access to supportive services for PLWHA. For ex-
ample, a given data system might add one or more data elements or modify
an existing data element to allow the system to provide data for estimating
a subgroup of the indicators identified by the committee, such as those per-
taining to supportive services, or to simplify identification of data represent-
ing HIV-infected individuals (e.g., flagging HIV/AIDS as a chronic condition
in the CCW). In cases where the population represented in a data system is
not constrained by the program it serves (e.g., Medical Monitoring Project),
steps might be taken either to make the population more representative of
the national population of PLWHA or to include groups (e.g., homeless)
who are less apt to be represented in other data systems.
OCR for page 14
14 MONITORING HIV CARE IN THE UNITED STATES
Recommendation 3-1. The Department of Health and Human Ser-
vices, the Department of Veterans Affairs, the Department of Housing
and Urban Development, and other relevant federal agencies should
review and, to the extent practicable, modify the federal data systems
identified by the committee to better enable them to be used for moni-
toring progress toward achieving the goals of the National HIV/AIDS
Strategy.
Currently there is variation among CDC reporting areas with respect to
longitudinal reporting of CD4 and viral load test dates and results. Uniform
longitudinal reporting of CD4 and viral load test dates and results from all
jurisdictions would facilitate the use of data from the National HIV Surveil-
lance System (NHSS) to estimate the core indicators for HIV care identified
by the committee. In addition, collection of longitudinal data on the initia-
tion and ongoing prescription or dispensing of antiretroviral therapy for
individuals diagnosed with HIV would provide the remaining data elements
necessary to use the NHSS as a source of data to estimate all of the core
clinical HIV care indicators. Use of NHSS data would permit estimation of
the indicators for the majority of the population diagnosed with HIV in the
United States, as well as for subpopulations based on race, ethnicity, sex,
gender, age, geographic area, and country of origin. Capturing informa-
tion on sexual orientation, sources of coverage for medical treatment, and
current geographic area of residence would facilitate use of NHSS data for
evaluation of indicators for specific subpopulations identified in the NHAS.
Recommendation 3-2. The Centers for Disease Control and Prevention
should take steps to enhance the National HIV Surveillance System
including
issuing guidelines or criteria for National HIV Surveillance System
•
reporting to include all CD4 and viral load test results
apturing longitudinal data pertaining to the initiation and ongoing
c
•
prescription or dispensing of antiretroviral therapy for individuals
diagnosed with HIV (e.g., through pharmacy-based reporting)
btaining information on sexual orientation and sources of cover-
o
•
age for medical treatment (including, but not limited to, Medicaid,
Medicare, Ryan White HIV/AIDS Program, other public funding,
private insurance or health maintenance organization, no cover-
age) and obtaining and employing current geographic marker of
residence (e.g., current address, zip code, partial zip code, census
block) for individuals in the National HIV Surveillance System
OCR for page 15
15
SUMMARY
Clinically based electronic health record (EHR) systems, such as those
used by the Veterans Health Administration (VHA) and Kaiser Permanente,
capture all, or most, of the data elements needed to estimate the clinical
HIV care indicators recommended by the committee. They also generally
capture at least some of the information needed to estimate the indicators
pertaining to mental health and substance abuse, but they do not routinely
capture data needed to estimate the indicators pertaining to supportive
services. Another limitation of provider-based EHR systems is that indi-
vidually each represents only one segment of the population of PLWHA in
the United States (e.g., those who receive care in the VHA system, Kaiser
Permanente enrollees). Other data systems represent larger proportions of
PLWHA nationally (e.g., NHSS, MSIS) and may contain information on
mental health, substance abuse, and supportive services (e.g., Ryan White
HIV/AIDS Program, MSIS), but they contain limited or no clinical data.
The National Health Information Network Exchange is an example of a
partnership between public and private entities to exchange health informa-
tion for a variety of purposes. It could serve as a model for or a foundation
upon which to build a broader data sharing partnership among public
and private data systems both to permit better estimation of the indicators
identified by the committee and to return information to private health care
systems and providers for the purpose of improving health care for indi-
viduals with HIV. Building upon existing data sharing partnerships would
help to reduce costs associated with implementation of such partnerships
for the exchange of information relevant to the provision of HIV care.
Recommendation 3-3. The Department of Health and Human Services,
the Department of Veterans Affairs, the Indian Health Service, the Fed-
eral Bureau of Prisons, and other relevant federal agencies should use
existing data from private data systems, including data from electronic
health records, to monitor the impact of the National HIV/AIDS Strat-
egy and the Patient Protection and Affordable Care Act on improving
HIV care. Federal agencies also should share data pertaining to HIV
care with private health care systems and providers to improve the
quality of care for individuals with HIV. Methods might include the
development of a data sharing partnership between public and private
data systems that include data pertaining to HIV care.
Barriers to the Collection of HIV Care Data
Grantees of federally funded HIV/AIDS programs are a vital source of
HIV care and supportive services data, but are currently overburdened by
the many reporting obligations they are required to fulfill as a condition of
program funding. The reporting requirements for core and supplemental
OCR for page 16
16 MONITORING HIV CARE IN THE UNITED STATES
HIV/AIDS programs administered by health departments are often project
specific, even across related programming (e.g., HIV prevention and HIV/
AIDS care), requiring staff to modify their reporting practices for each
grant. Reporting is further complicated by the fact that programs operate
on different grant cycles so that reports for related programs are due at dif-
ferent times during the year. According to the Presidential Advisory Council
on HIV/AIDS, the current reporting requirements for grantees of federally
funded HIV/AIDS programs have not resulted in a set of metrics by which
to thoroughly monitor the HIV epidemic or to evaluate federal HIV/AIDS
programs. A smaller number of metrics that are aligned with NHAS goals
could be used across federal agencies to monitor progress in managing the
epidemic. As it was preparing this report, the committee learned that there
is an effort under way by HHS to identify a set of HIV-related metrics to
be used across funding agencies and reduce reporting burden for program
grantees. The committee supports this current effort and recommends that
it be maintained so that data needs can be periodically reprioritized based
on changes in the HIV epidemic and to facilitate continued minimization
of grantee reporting burden.
Recommendation 4-1. The Department of Health and Human Services
should maintain and institutionalize the existing effort to streamline
data collection and reduce reporting requirements for federally funded
HIV/AIDS programs. This will allow for periodic reprioritization of
data needs, based on changes in the HIV epidemic that occur over time,
and ensure the continuous availability of data to effectively monitor
HIV care while minimizing reporting requirements for grantees. The
data reprioritization should involve health departments, HIV provider
organizations, and federal agencies that are major funders of HIV/
AIDS programs, including HHS, the Department of Veterans Affairs,
and the Department of Housing and Urban Development.
Providers of HIV care and supportive services contend with numerous
federal laws and state statutes and regulations on the proper use and dis-
closure of patient information. Although important to patient privacy, the
often inconsistent nature of these protections, which leave the decision of
whether or not to disclose requested patient information open to various
interpretations, may result in discrepancies in data sharing and reporting
across states and providers. Such discrepancies may influence the avail-
ability and quality of data needed to estimate indicators of HIV care and
supportive services.
OCR for page 17
17
SUMMARY
Recommendation 4-2. The Department of Health and Human Services
should issue guidance to the HIV care community to clarify what is
permissible patient information to share given federal and state privacy
laws.
The Role of Health Information Technology and Data
System Integration in the Collection of HIV Care Data
Increased exchange of health-related information across providers of
HIV care and supportive services has the potential to improve care coor-
dination and longitudinal tracking of care. Some integrated health care
systems, such as the VHA and Kaiser Permanente, effectively manage in-
formation across providers within their networks, but most PLWHA receive
care and supportive services outside of these networks, and many receive
care across multiple organizations. The committee identified local efforts
in health information exchange that have resulted in improved monitoring
of patient care and outcomes. However, these efforts have not been scaled
broadly among entities serving PLWHA.
Recommendation 5-1. The Department of Health and Human Services
should review existing mechanisms for the confidential and secure
exchange of health information to provide a platform to increase the
exchange of such information among entities serving individuals with
HIV. These entities may include, but are not limited to, state and local
health departments, government agencies, and community-based or-
ganizations funded to provide medical care, substance use and mental
health services, and housing and other supportive services.
Interoperability—the ability of different IT systems and software ap-
plications to communicate, exchange, and use information—is not fully
possible in the United States at this time due to a lack of infrastructure to
support it. For the most part, the various sources of care and care coverage
for PLWHA have their own health IT systems with disparate architectures
and vocabularies, posing a challenge to the exchange of data across systems.
Recommendation 5-2. The Department of Health and Human Services
and the Office of the National Coordinator for Health Information
Technology should provide technical assistance and policy guidance to
state and local health departments, clinical providers, and other agen-
cies serving individuals with HIV to improve the interoperability of
data systems relevant to monitoring HIV care and supportive services.
OCR for page 18
18 MONITORING HIV CARE IN THE UNITED STATES
Efficient Analysis of HIV Care Indicators and
Dissemination of Data by Federal Agencies
Estimation of the committee’s recommended indicators for clinical
HIV care and mental health, substance abuse, and supportive services will
often require combining data from multiple data systems. Making valid
inferences about the indicators across different populations and over time
using data from multiple data systems presents a range of analytic and lo-
gistical challenges. Such challenges will change over time and will have to
be reevaluated periodically.
Recommendation 6-1. At least once every 2 years, the Department of
Health and Human Services should reevaluate mechanisms for combin-
ing data elements to estimate key indicators of HIV care and access to
supportive services, analyze the combined data, and identify and ad-
dress barriers to the efficient analysis of such data, including relevant
statistical methodologies. To facilitate this process, HHS should engage
a center of excellence representing broad areas of expertise that include
information technology, statistical methodologies for combining data,
and data system content.
Information on the indicators recommended by the committee will
be of interest to a variety of stakeholders, including policy makers, health
departments, HIV care providers, patients, and researchers. The dissemi-
nated information can be used in numerous ways—from informing policy
decisions to supporting the development of research projects—that have the
potential to improve HIV care quality.
Recommendation 6-2. The Department of Health and Human Services
should report to the public at least once every 2 years on indicators of
HIV care and access to supportive services to foster improvements in
the quality of HIV care and in monitoring progress toward meeting the
goals of the National HIV/AIDS Strategy.
The reporting interval of at least once every 2 years allows for regular
reporting of the indicator data to monitor the NHAS while minimizing
reporting burden and associated costs.
