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3
Sources of Data on HIV Care to
Assess Indicators of HIV Care and
Access to Supportive Services
In this chapter the committee describes data from public and private
data systems to assess the indicators for HIV care and mental health, sub-
stance abuse, and supportive services identified in Chapter 2. The chapter
identifies what the committee determined to be the best sources of data
for assessing the indicators, discusses ways to maximize their usefulness,
and recommends approaches for supplementing current data systems to
gauge the impact of the National HIV/AIDS Strategy (NHAS) and the
Patient Protection and Affordable Care Act (ACA) in improving HIV care
(statement of task heading text and question 1). The chapter also describes
other data collection and standardization efforts that could be utilized to
monitor improvements in HIV care and how to regularly obtain data that
capture the care experiences of people living with HIV/AIDS (PLWHA)
without substantial new investments (statement of task questions 2 and 3).
The chapter ends with the committee’s conclusions and recommendations.
IDENTIFICATION OF DATA SYSTEMS
To identify the best public and private sources of data to estimate
the indicators related to continuous HIV care and access to services for
PLWHA, the committee first compiled an initial list of 32 public and pri-
vate data systems or data collection agencies, including those that are HIV
specific and those that are not HIV specific but include information on
PLWHA. The list included data collection efforts and systems highlighted
in the project proposal as well as others identified by committee members
as important or potential sources of information on PLWHA, including care
127
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128 MONITORING HIV CARE IN THE UNITED STATES
and services provided to them. Box 3-1 summarizes the data systems and
collection activities identified by the committee for further consideration.
Requests for information were sent to individuals familiar with 29 of
the data systems and agencies. Several other potential sources of data—ac-
countable care organizations, the Enhanced Comprehensive HIV Preven-
tion Planning (ECHPP) Project, and the 12 Cities Project—were still being
implemented at the time of the inquiry.1 Information was obtained from 27
of the data systems or agencies contacted. The committee was unable to ob-
tain information from Aetna and the HMO (Health Maintenance Organiza-
tion) Research Network. The Substance Abuse and Mental Health Services
Administration provided information on several data collection activities.
In total, the committee reviewed information on 31 different data collec-
tion activities. The committee requested background information (e.g., the
population for which data are collected; the method and frequency of data
collection; whether the data are public, private, or proprietary) and details
about the data elements captured by each of the data systems in the areas
of HIV testing and linkage to care, clinical care, access to care, treatment
and adherence, financial security, demographics, risk behavior assessment,
and patient experience with care.
The data systems vary with respect to their design; the size, nature,
and representativeness of population; the source and type of data; and the
specific data elements included. The committee took account of these fac-
tors when considering which data systems, individually and in aggregate,
would be most helpful for estimating the indicators presented in Chapter 2
and for assessing the impact of the NHAS and the ACA in improving HIV
care in the United States.
The committee identified 12 data systems it considered to be most use-
ful for tracking the impact of the NHAS and the ACA on HIV care in the
United States:
• National HIV Surveillance System
• Medical Monitoring Project
• Ryan White Services Report
• Ryan White AIDS Drug Assistance Program Reports
• Medicaid Statistical Information System
• Chronic Condition Data Warehouse
• North American AIDS Cohort Collaboration on Research and
Design
• CFAR Network of Integrated Clinical Systems
• HIV Research Network
• Clinical Case Registry: HIV
1 Complete descriptions of ECHPP and the 12 Cities Project are provided later in this chapter.
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129
SOURCES OF DATA
BOX 3-1
Data Collection Activities Considered by the Committee
HIV Care–Specific Data Systems
Public
• National HIV Surveillance System
• Medical Monitoring Project
• yan White HIV/AIDS Program (Ryan White Services Report; Ryan White
R
AIDS Drug Assistance Program Reports; Ryan White Dental Services
Report)
• Clinical Case Registry: HIV
• Housing Opportunities for Persons with AIDS
• Minority AIDS Initiative
• HIV Outpatient Study
• tudy to Understand the Natural History of HIV/AIDS in the Era of Effec-
S
tive Therapy
• Enhanced Comprehensive HIV Prevention Planning Project
• 12 Cities Project
Private
• North American AIDS Cohort Collaboration on Research and Design
• CFAR Network of Integrated Clinical Systems
• HIV Research Network
• AIDS United
Data Systems with Information that Includes People Living with HIV
Public
• Medicaid Statistical Information System
• Chronic Condition Data Warehouse
• Resource and Patient Management System
• Bureau of Prisons Electronic Medical Record
• B
ureau of Primary Health Care–Federally Qualified Health Center Uniform
Data System
• Substance Abuse and Mental Health Services Administration
• Healthcare Cost and Utilization Project
• National Ambulatory Medical Care Survey
• National Hospital Ambulatory Medical Care Survey
• National Vital Statistics System
Private
• rivate health insurers (Aetna, Kaiser Permanente, United Health [Ingenix
P
Normative Health Information Database®], Wellpoint [HealthCore Inte-
grated Research Database®])
• MarketScan Research Databases
• HMO Research Network
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130 MONITORING HIV CARE IN THE UNITED STATES
• Kaiser Permanente
• National Vital Statistics System
Two additional data systems provide useful information for track-
ing the impact of the initiatives on HIV care for two small but important
subpopulations of HIV-infected individuals (American Indians and Alaska
Natives; federal prisoners) and a third provides information relevant to
housing assistance and other supportive services for PLWHA:
• Resource and Patient Management System
• Bureau of Prisons Electronic Medical Record
• Housing Opportunities for Persons with AIDS
Appendix Table 3-1 provides an overview of the data systems, includ-
ing their strengths and limitations, potential enhancements to consider,
and implications of the ACA for each. Although no single data system
can fully track the progress of the NHAS and the ACA, the committee
concluded that a combination of these 15 data systems can provide a col-
lective platform for helping to evaluate these initiatives and for estimating
the indicators identified to measure the quality of HIV care and access to
supportive services. Appendix Tables 3-2a through 3-2e show which of
the data elements associated with the indicators are available in each data
system. Appendix Table 3-2f shows which data systems capture additional
data elements that were identified by the committee to be of interest, but
not required to estimate the indicators. Appendix Tables 3-3a through
3-3d summarize the indicators that can be estimated using information
available from each of the data systems. Some of the data collection instru-
ments are publicly available on the Internet (see Appendix Table 3-4); these
provide more complete information on the data captured by the relevant
data system.
SOURCES OF HIV CARE DATA
National HIV Surveillance System
The Centers for Disease Control and Prevention (CDC) maintains the
National HIV Surveillance System (NHSS), which provides data about the
HIV/AIDS epidemic for program planning and resource allocation. Started
in 1981, the surveillance system is conducted in all 50 states and the Dis-
trict of Columbia, as well as American Samoa, Guam, Puerto Rico, the U.S.
Virgin Islands, and the Northern Mariana Islands. In addition, the three
freely associated states (the Federated States of Micronesia, the Republic of
the Marshall Islands, and the Republic of Palau) report HIV surveillance
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SOURCES OF DATA
data to CDC. CDC funds and assists state and local health departments to
collect the information, and the state and local HIV surveillance systems
represent valuable additional sources of data pertinent to HIV care.2 The
NHSS is a population-based census of all persons diagnosed and reported
with HIV infection in the United States, including both those individuals
receiving HIV care and those who are not in care.3
Since April 2008, all 50 states and the District of Columbia, as well
as American Samoa, Guam, the Northern Mariana Islands, Palau, Puerto
Rico, and the U.S. Virgin Islands, have been using the same confidential
name-based reporting standards for newly diagnosed cases of HIV. Al-
though the NHSS only includes data from those confidential name-based
reporting systems that have been collecting HIV data for at least 4 years in
the national aggregate numbers it publishes (CDC, 2010),4 all states and
areas report HIV surveillance data to CDC, and the data for each report-
ing area are included in the annual HIV Surveillance Report. As such, the
population in the surveillance system is one of the most nationally repre-
sentative and provides the largest available sample of diagnosed PLWHA
in the United States.
Another advantage of the NHSS is the use of standardized definitions
of variables and reporting methods. In terms of data elements of interest
to the committee,5 the system includes date of HIV/AIDS diagnosis; infor-
mation on CD4+ cell count and plasma HIV RNA (viral load) closest to
diagnosis; and optional fields for HIV and substance abuse treatment refer-
ral, pregnancy status, and antiretroviral therapy (ART) status at the time of
reporting. Data gathered also can be used to monitor disparities with regard
to race, ethnicity, sex, gender, age, geographic area, and country of birth.
In addition, most jurisdictions report all CD4 count and viral load lab
2 State, territorial, and local HIV surveillance systems may include data from code-based
reports initiated prior to name-based reporting and anonymous results that have not been
name ascertained and hence are not included in the NHSS. The proportion of these uncounted
cases can be calculated precisely by the reporting areas that have made the transition to name-
based reporting.
3 The national surveillance system is meeting its completeness standard of ≥85 percent for all
diagnosed cases being reported to the system (CDC response to IOM request for information,
April 4, 2011).
4 The 2009 national aggregate data published in 2012 includes data from the 46 states and
5 dependent areas that had implemented confidential name-based reporting by January 2007
(CDC, 2012, Commentary). Two additional states will be represented in the national aggregate
data reported next year. The HIV Surveillance Report for 2012, to be issued in 2014, will be
the first to include aggregate data from all 50 states (CDC, 2010).
5 Although the data systems considered by the committee capture many useful data elements,
only those data elements identified by the committee to be of specific interest for tracking
the impact of the NHAS and ACA are discussed in the text. Appendix Table 3-4 lists the
publicly available data collection instruments for the data systems discussed, which provide a
comprehensive picture of the data elements captured by each.
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132 MONITORING HIV CARE IN THE UNITED STATES
results,6 which permits the tracking of individuals’ health status over time.
In those cases, additional information can be extrapolated or calculated
from available data. For example, the time between diagnosis and initial
(or second) CD4 and viral load test can serve as a surrogate for the length
of time between diagnosis and entry into care, and the number of routine
HIV care visits per year may be estimated from the number of HIV-related
lab reports per year. One limitation of the NHSS, as noted in the NHAS
(ONAP, 2010, p. 18), is the fact that although most jurisdictions report all
lab results, such as CD4 and viral load results, not all do. Another limi-
tation is the problem of incomplete or inaccurate reporting by clinicians
treating PLWHA and by state and local health departments. Studies have
raised questions about the accuracy and completeness of NHSS data. A
study comparing self-reported dates of HIV diagnosis with those reported
to the NHSS indicates that 56 percent of the date pairs agreed on the year
of diagnosis, with another 17 percent differing by 1 year and 19 percent
by 3 or more years (Hall et al., 2005). Thirty percent of self-reported dates
were earlier than those reported in surveillance data (Hall et al., 2005). An-
other study comparing date of first diagnosis based on self-report, medical
record, and surveillance system data showed 51 percent agreement between
self-reported year of diagnosis and the surveillance system and 70 percent
agreement between the years reported in medical records and in surveillance
(McCoy et al., 2010). Another 21 percent of self-reported dates differed by
1 year, while 23 percent differed by 3 or more years (McCoy et al., 2010).
On average the self-reported dates were earlier than those recorded in the
surveillance data (McCoy et al., 2010).
According to one study of reporting completeness, 81 percent of HIV
diagnoses are reported within 12 months of diagnosis (Hall et al., 2006).
This figure corresponds with the observation of McCoy and colleagues that
only 81 percent of the cases in their study could be matched to surveil-
lance data (McCoy et al., 2010). Incomplete reporting may be explained
by lack of timeliness in reporting, failure to comply with case reporting, or
an assumption that previously diagnosed cases already had been reported
(McCoy et al., 2010). Structures are in place to improve the accuracy and
6 As of June 15, 2010, 33 of 59 reporting areas (50 states, District of Columbia, 5 U.S.
dependent areas, and 3 freely associated states) were reporting all CD4 and viral load test
results (see Appendix Table 3-5), including 30 states, District of Columbia, Guam, and Puerto
Rico (Personal communication, Amy Lansky, Centers for Disease Control and Prevention,
October 6, 2011). One additional state (Kentucky) reported all CD4 results, but only detectable
viral load results, and 7 additional states reported all viral load results, but not all CD4 results.
More states are moving toward reporting all CD4 and viral load test results. Massachusetts,
for example, mandated all CD4 and all HIV viral load results be electronically reported by
clinical and commercial laboratories as of January 2012 (Massachusetts Department of Public
Health, 2012).
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SOURCES OF DATA
timeliness of reporting. For example, increased use of electronic laboratory
reporting is expected to increase the completeness and timeliness of HIV
surveillance reporting (Overhage et al., 2008).
Despite current gaps in accuracy and reporting, the NHSS is one of
the most representative HIV data systems that exists and offers a wealth
of information. In terms of the data elements required to assess the core
indicators for clinical HIV care, the NHSS, as previously noted, currently
captures the individual’s date of diagnosis and the dates and results of the
individual’s first and most recent viral load test and the CD4 test at, or
closest to, the date that the individual was determined to be HIV-infected
or to have AIDS (see Appendix Table 3-2a), as well as the first CD4+ cell
count <200 cells/mm3. The ongoing CD4 and viral load test dates avail-
able for most reporting areas may be used as a surrogate for dates of first
and ongoing visits for routine HIV care in those jurisdictions. These data
permit estimation of the indicators for linkage to and continuity of care,
regular CD4 and viral load testing, and individuals in care who achieve or
maintain a CD4+ cell count of greater than 350 cells/mm3 (see Appendix
Table 3-3a).
A revised version of the Adult HIV Confidential Case Report was ap-
proved by the Office of Management and Budget (OMB) in June 2011. The
form includes a section that asks whether the individual “has ever taken
any antiretrovirals (ARVs),” ARV medications taken, and dates ARVs were
taken (date begun, date of last use). This information, which is collected
“if required by Health Department,” is required for state and local health
department that participate in CDC’s HIV Incidence Surveillance (HIS) and
Variant, Atypical and Resistant HIV Surveillance (VARHS) activities and
is optional for all other surveillance areas (CDC response to IOM request
for information, October 20, 2011). When available, the ARV information
may permit estimation of the core indicators pertaining to ART initiation
and subsequent durable virologic suppression. However, there currently
is no mechanism by which the NHSS can routinely capture ARV usage
longitudinally. Longitudinal individual-level ART data in conjunction with
longitudinal CD4 and viral load test dates and results would more reliably
permit calculation of the relevant core indicators. Enhancement of NHSS
data in this way would allow its use to evaluate all of the core HIV care
indicators for the majority of the population diagnosed with HIV in the
United States.7 Information is also captured on pregnancy status at the time
the form is completed, which may be used to estimate the additional clinical
7 Sincethe NHSS captures date of death, it can provide the data necessary to calculate the
core indicator pertaining to all cause mortality among PLWHA. However, as discussed in
more detail later in this report, the National Vital Statistics System also collects and calculates
annual data on HIV mortality.
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134 MONITORING HIV CARE IN THE UNITED STATES
care indicator pertaining to proportion of pregnant women with HIV who
are receiving ART.
NHSS data also permit calculation of the core HIV care indicators for
subpopulations of PLWHA based on age, race and ethnicity,8 sex assigned
at birth, current gender identity, geographic distribution, and country of
birth. Although CDC does not currently capture information specifically
about individuals’ sexual orientation, which relates to the NHAS target
and associated indicator pertaining to the proportion of diagnosed gay or
bisexual men with undetectable viral load, combining data on sex assigned
at birth with data collected on sex of sexual partner(s) (sex with male) can
serve as a close proxy.
As is common with disease surveillance in the United States, the HIV
surveillance system also does not collect information about income level.
Unlike the previous version of the Adult HIV Confidential Case Report
form, which included an optional section asking about the individual’s
primary source of reimbursement for medical treatment (Medicaid, private
insurance or HMO, no coverage, other public funding, clinical trial or
government program, unknown), the current form does not collect that
information. Collection of such data, especially if the Ryan White HIV/
AIDS Program were added to the list of reimbursement source checkboxes
provided on the form, would permit the use of NHSS data to estimate the
indicators for the subpopulations specifically identified in the NHAS and
would help to facilitate the evaluation of data across data systems as dis-
cussed in Chapter 6.
Uniform reporting to CDC of ongoing CD4 and viral load test dates
and results from all jurisdictions and collection of longitudinal information
on ARV usage would permit the use of data from the NHSS to assess all of
the core indicators for HIV care identified by the committee. Use of national
surveillance system data would permit evaluation of the indicators for the
vast majority of the population diagnosed with HIV in the United States,
as well as for subpopulations based on race, ethnicity, sex, gender, age, and
country of origin. In addition, capturing information on sexual orientation
and maintaining current geographic areas of residence for HIV-infected
individuals in the system would further enhance the ability of the NHSS
to be used to evaluate the impact of the NHAS and health care reform on
HIV care in the United States.
8 Like
the other federal data systems, NHSS captures data on race and ethnicity as specified
by OMB (1977, 1997a,b).
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SOURCES OF DATA
Medical Monitoring Project
Initiated in 2005 in response to an Institute of Medicine (IOM, 2004)
report, the Medical Monitoring Project (MMP) is a CDC-sponsored popu-
lation-based surveillance system designed to collect comprehensive clinical
and behavioral service need, utilization, and outcomes data on a nationally
representative sample of adults (≥18 years of age) living with HIV/AIDS
who are receiving medical care from outpatient facilities in the United
States and Puerto Rico (Blair et al., 2011). MMP is the first project since
the HIV Cost and Services Utilization Study (Bozzette et al., 1998) almost
15 years ago that is designed to obtain comprehensive information about
HIV care from a nationally representative population of PLWHA who are
receiving care. MMP employs a probability proportional to size sampling
design to obtain cross-sectional probability samples of its target population.
A sample of about 400 individuals from each of 26 project areas (approxi-
mately 10,400 people) was selected each year for the 2007 and 2008 data
collection cycles.9 Data are obtained from individual patient interviews and
medical record review.
MMP captures most of the data elements needed to assess all of the
indicators identified by the committee (see Appendix Tables 3-2a to 3-2e
and 3-3a to 3-3c), including data on supportive services, which makes it
an attractive source of data. In terms of demographic data, the interview
component of MMP captures self-reported data on race, ethnicity, sex at
birth, gender identity (male, female, transgender), and sexual orientation
(homosexual, heterosexual, bisexual). In addition to the comprehensive-
ness of the data currently captured, the nature of the interview component
of MMP allows flexibility to modify the questionnaire to capture different
data elements that are subsequently determined to be useful. Starting with
the 2011 cycle, for example, MMP is capturing data on stigma and dis-
crimination, making it the only data system to do so among those examined
by the committee.
An additional strength of MMP is its design to generate results that are
nationally representative of the population of HIV-infected adults in care
in the United States, which makes it a potentially valuable tool for track-
ing changes in access to and quality of HIV care in the country. Although
MMP only includes HIV-infected individuals who are in care, the sample
is not limited to those receiving care through a specific payer (Medicaid,
Medicare, Veterans Health Administration [VHA], private or HMO) as is
the case with a number of other data systems.
Despite its strengths, MMP also has several limitations. One significant
9 Details
of the sampling method are described in the MMP 2009 protocol (CDC, 2009) and
summarized in Blair et al. (2011) and on the MMP website (CDC, 2011b).
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136 MONITORING HIV CARE IN THE UNITED STATES
concern about MMP is its low participation rate. For the 2007 data col-
lection cycle, 10,192 individuals were determined to be eligible for partici-
pation. The median participation rate was 40 percent, ranging from 3 to
76 percent depending on the project area. Interview data ultimately were
reported for 3,643 of the 3,944 participants interviewed; medical record
abstraction data were not reported (Blair et al., 2011). As a result of the
low participation rate, the data for the 2007 collection cycle may not be
nationally or locally representative of HIV-infected adults receiving care
in the United States. Steps have been taken to improve participation rates
beginning with the 2009 collection cycle, and CDC anticipates that future
data will permit nationally representative results (Blair et al., 2011).10 It
is not clear, however, that the efforts will completely resolve the issues of
nonresponse bias. For example, studies have found that PLWHA who are
harder to reach and/or engage for study participation are more likely to be
homeless or unstably housed; to be struggling with mental health or drug
use problems; to be socially isolated; and to have high rates of missed ap-
pointments. Specific efforts to engage such populations are needed to ensure
their representation in the study.
A second concern about MMP is the potential for social desirability
response bias in the responses to the interview questions. Since many of the
the interviews are conducted “in person,” respondents may be reluctant to
answer accurately if doing so means providing what they perceive to be less
“socially appropriate” responses to sensitive questions (Blair et al., 2011).
Providing participants with a means to enter their responses to sensitive
questions directly into the computer or on the response form is one way
to help counteract social desirability response bias. This approach would
avoid the necessity of sharing their responses with the interviewer and could
improve the accuracy of the information collected (Carr et al., 1983; Greist
et al., 1973; Kobak et al., 1996; Lawrence et al., 2010; Lucas et al., 1977;
Metzger et al., 2000; Petrie and Abell, 1994; Waruru et al., 2005; Willig,
2011), although a study of clients at an addiction treatment center found
no significant differences in the reliability of information on drug, alcohol,
or tobacco use collected through computerized interviews, face-to-face in-
terviews, or self-report formats (Skinner and Allen, 1983).
A third concern is the potential inaccuracy of clinical data (lab values,
vaccinations, ART prescription) collected through participant self-report
(Blair et al., 2011). Although a problem for reports of findings based
on clinical information obtained solely from interviews (e.g., Blair et al.
2011), medical record abstraction is another component of MMP (CDC,
2009, pp. 22-25), which permits comparison with and corroboration of
10 Some interview and medical record abstraction data from MMP’s 2009-2010 cycle have
been reported (CDC, 2011d).
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SOURCES OF DATA
the self-reported clinical data. It is important that data from the medical
record abstraction component of the protocol be available to permit such
cross-checking and confirmation of self-reported information. The 2009
MMP protocol specifies that in project areas that have the surveillance
authority to abstract medical records of selected patients without their
consent, medical record abstraction should be completed for all sampled
patients, including those who decline to participate in the interview or who
cannot be located for interview (CDC, 2009, p. 25). In project areas with
a more narrow definition of surveillance, where record abstraction cannot
be completed without patient consent, minimal data can be collected on
all sampled patients. The minimum data set contains the same fields as the
NHSS case report form, and therefore these data can be collected in all
project areas under HIV/AIDS surveillance authority.
Despite its current limitations, the research infrastructure, design,
and implementation efforts that are in place make MMP a promising
tool for monitoring care among HIV-infected adults receiving care in
the United States. The committee supports the current efforts of CDC to
improve individual participation and completion rates. Other strategies
to increase participation might include providing additional incentives
for study participants11 and participating clinics or reducing the time
required to complete the full interview by selectively eliminating certain
questions.12 In addition, implementation of the “minimum data set” re-
cords abstraction could help to provide some data for individuals who
decline to participate.
Beginning with the 2012 data collection cycle, medical record abstrac-
tion will focus only on the 12 months preceding the interview; earlier clini-
cal data will no longer be captured (Personal communication, Amy Lansky,
Centers for Disease Control and Prevention, October 20, 2011). Although
limiting medical record abstraction to the preceding 12 months likely will
expedite collection of the data, certain data elements required to estimate
some HIV care indicators may no longer be captured. For example, data
on hepatitis B screening, vaccination, and immunity would not be captured
if the relevant testing and immunization took place more than 12 months
prior. Another option for reducing the number of questions in the standard
interview without undermining the breadth of information provided might
be to eliminate (some of) the self-reported clinical data if the same infor-
11 The 2009 MMP protocol specifies that individual participants will receive approximately
$40 in cash or cash equivalent for participating in the interview (CDC, 2009, p. 21).
12 Currently the MMP protocol offers two interview instruments: the Standard Question-
naire, which is the default and takes approximately 45 minutes to complete, and the Short
Questionnaire, which is reserved for individuals who speak neither English nor Spanish or
are too sick to respond to the Standard Questionnaire and takes approximately 20 minutes
to complete.
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226 MONITORING HIV CARE IN THE UNITED STATES
APPENDIX TABLE 3-3c Data Systems Mapped to Additional Clinical
HIV Care Indicators
Proportion Proportion
screened for Proportion screened
TB since screened for for Proportion
diagnosis chlamydia, hepatitis screened Proportion
and results gonorrhea, B since for immunized
interpreted and syphilis diagnosis hepatitis C for influenza
National HIV No No No No No
Surveillance
System
Medical Yes Yes Yes Yes Yes
Monitoring (2007– (2007–
Project 2011 cycles 2011 cycles
only)* only)*
Ryan White Yes Syphilis Yes Yes No
Services Report (but lacks within (within (within
diagnosis 12-month 12-month 12-month
date) reporting reporting reporting
period period) period)
Ryan White No No No No No
ADAP Reports
Medicaid Yes Yes Yes Yes Yes
Statistical (but lacks (but lacks
Information diagnosis diagnosis
System date; TB date)
test results)
Medicare Yes Yes Yes Yes Yes
Chronic (but lacks (but lacks
Condition Data diagnosis diagnosis
Warehouse date; TB date)
test results)
*Starting with the 2012 data collection cycle, medical record abstraction will focus on the
12 months preceding the interview. Earlier clinical data will no longer be captured.
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SOURCES OF DATA
Proportion with
Proportion Proportion HIV-associated
immunized who receive nephropathy,
for drug hepatitis B Proportion
pneumococcal Proportion resistance (when treatment HIV-infected
pneumonia immunized for testing prior is indicated) or pregnant women
since hepatitis B (if to ART active TB who who are not on
diagnosis needed) initiation are not on ART ART
No No No No Yes (when
pregnancy and
ART status
captured)
Yes Yes Yes Yes Yes
(during (2007–2011 (during
surveillance cycles only)* surveillance
period) period)
No Whether No No Yes
vaccination series (ART prescribed
is completed in last 12
months)
No No No No Data only for
fully ADAP-
funded drugs
Yes Yes Yes Yes Yes
(but lacks (if covered (if claims filed (if pregnancy
diagnosis and with proper captured
date) identifiable diagnosis code/s) by relevant
by code; diagnostic
lacks ART code/s)
initiation
date)
Yes Yes Yes No No
(but lacks (but lacks
diagnosis ART
date) initiation
date)
continued
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228 MONITORING HIV CARE IN THE UNITED STATES
APPENDIX TABLE 3-3c Continued
Proportion Proportion
screened for Proportion screened
TB since screened for for Proportion
diagnosis chlamydia, hepatitis screened Proportion
and results gonorrhea, B since for immunized
interpreted and syphilis diagnosis hepatitis C for influenza
North Yes No Yes Yes No
American (date-of-
AIDS Cohort diagnosis
Collaboration data
on Research incomplete)
and Design
CFAR Network Yes Yes Yes Yes Proposed
of Integrated (date-of- for 2012
Clinical diagnosis
Systems data
incomplete)
HIV Research Yes Yes Yes Yes Yes
Network (for a subset (for a subset
of sites) of sites)
Clinical Case Yes Yes Yes Yes Yes
Registry: HIV (in VHA)
(VHA)
Kaiser Yes Yes Yes Yes Yes
Permanente (at KP)
(KP)
Indian Health Yes Yes Yes Yes Yes
Service (IHS) (in IHS)
Federal Bureau Yes Yes Yes Yes Yes
of Prisons (although
data may
not be
available in
EHR)
Housing No No No No No
Opportunities
for Persons with
AIDS
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229
SOURCES OF DATA
Proportion with
Proportion Proportion HIV-associated
immunized who receive nephropathy,
for drug hepatitis B Proportion
pneumococcal Proportion resistance (when treatment HIV-infected
pneumonia immunized for testing prior is indicated) or pregnant women
since hepatitis B (if to ART active TB who who are not on
diagnosis needed) initiation are not on ART ART
No No Yes Yes Yes
(as of 2012)
Proposed for Proposed for Yes Yes Yes
2012 2012 (as of 2012)
(date-of-
diagnosis data
incomplete)
Yes Yes Yes Yes No
(for a subset (for a subset (for a subset (for a subset
of sites) of sites) of sites) of sites)
Yes Yes Yes Yes Yes
Yes Yes Yes Yes Yes
Yes Yes Yes Yes Yes
Yes Yes Yes Yes Yes
(may not be (would
available) require record
abstraction and
verification)
No No No No No
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230 MONITORING HIV CARE IN THE UNITED STATES
APPENDIX TABLE 3-3d Data Systems Mapped to Additional Mental
Health, Substance Abuse, and Supportive Services Indicators
Proportion
Proportion screened Proportion
screened for Proportion assessed Proportion
for mental substance assessed for for need assessed for
health use need for for food or need for
disorders at disorders at housing at nutrition at transportation
least once least once least once least once at least once
in the past in the past in the past in the past in the past 12
12 months 12 months 12 months 12 months months
National HIV No No No No No
Surveillance
System
Medical Yes Yes No No No
Monitoring (whether (whether (whether
Project received/ received/ received/
needed needed needed
services, services, services,
but not but not but not
date) date) date)
Ryan White Yes Yes No No No
Services Report
Ryan White No No No No No
ADAP Reports
Medicaid Yes Yes No No No
Statistical
Information
System
Medicare No No No No No
Chronic
Condition Data
Warehouse
North American No No No No No
AIDS Cohort
Collaboration
on Research
and Design
CFAR Network Yes Yes No No No
of Integrated
Clinical Systems
HIV Research No No No No No
Network
Clinical Case No No No No No
Registry: HIV
(VHA)
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SOURCES OF DATA
APPENDIX TABLE 3-3d Continued
Proportion
Proportion screened Proportion
screened for Proportion assessed Proportion
for mental substance assessed for for need assessed for
health use need for for food or need for
disorders at disorders at housing at nutrition at transportation
least once least once least once least once at least once
in the past in the past in the past in the past in the past 12
12 months 12 months 12 months 12 months months
Kaiser Yes Yes No No No
Permanente
Indian Health Yes Yes No No No
Service
Federal Bureau Yes Yes N/A N/A N/A
of Prisons
Housing No No Yes No No
Opportunities
for Persons with
AIDS
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232 MONITORING HIV CARE IN THE UNITED STATES
APPENDIX TABLE 3-4 Publicly Available Data Collection
Instruments and Information
Data System Collection Instrument/s
National HIV Surveillance 1. Adult HIV/AIDS Confidential Case Report
System
Medical Monitoring Project 1. 2010 Medical History Form*
2. 2010 Surveillance Period Inpatient Form*
3. 2010 Surveillance Period Summary Form*
4. 2010 Surveillance Period Visit Form*
5. 2010 Standard Questionnaire*
6. 2011 Medical Monitoring Project Response Cards
Ryan White AIDS Drug 1. AIDS Drug Assistance Program (ADAP) Data
Assistance Program (ADAP) Report—Final Client-Level Data Variables (Effective
Reports October 1, 2012)
2. ADAP Data Report: Grantee Report: Summary of
Changes to the Grantee-Level Variables
3. ADAP—Quarterly Data Report (Phasing out this
year)
Ryan White Services Report 1. Data Elements for Client-Level Data Export
(Effective for the 2010 Annual RSR)
Medicaid Statistical Information 1. Medicaid Analytic eXtract Files (MAX) User Guide
System 2. Medicaid and CHIP Statistical Information System
(MSIS): File Specifications and Data Dictionary
Medicare Chronic Condition 1. Chronic Condition Data Warehouse User Guide
Data Warehouse 2. Summary Statistics
3. Data Dictionaries
4. Chronic Conditions
5. Analytic Guidance
CFAR Network of Integrated 1. CNICS Data Elements
Clinical Systems
Indian Health Service 1. HIS Clinical Reporting System (BGP): Selected
Measures (Local) Report Performance Measure List
and Definitions
Federal Bureau of Prisons 1. Management of HIV: Federal Bureau of Prisons
Clinical Practice Guidelines—May 2011
Housing Opportunities for 1. Annual Progress Report (APR): Measuring
Persons with AIDS Performance Outcomes
2. Consolidated Annual Performance Evaluation
Report (CAPER): Measuring Performance Outcomes
3. Homeless Management Information System (HMIS)
Data Standards, Revised Notice—March 2010
*Link to 2009 version of MMP data collection materials.
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SOURCES OF DATA
Link/s
1. http://health.utah.gov/epi/forms/Adult%20HIV.AIDS%20Report%20Form.pdf
1. http://www.cdc.gov/hiv/topics/treatment/MMP/pdf/MMP_2009_MRA_MHF_v400_
OMB_Race_Jan5_2009.pdf
2. http://www.cdc.gov/hiv/topics/treatment/MMP/pdf/MMP_2009_MRA_SPIF_v400_
Jan5_2009.pdf
3. http://www.cdc.gov/hiv/topics/treatment/MMP/pdf/MMP_2009_MRA_SPSF_v400_
Jan5_2009.pdf
4. http://www.cdc.gov/hiv/topics/treatment/MMP/pdf/MMP_2009_MRA_SPVF_v400_
Jan5_2009.pdf
5. http://www.cdc.gov/hiv/topics/treatment/MMP/pdf/2009MMPStandardEnglish.pdf
6. http://www.cdc.gov/hiv/topics/treatment/mmp/pdf/2011_english_response_cards.pdf
1. http://hab.hrsa.gov/manageyourgrant/files/habadrclientlevelvariables.pdf
2. http://hab.hrsa.gov/manageyourgrant/files/adrgranteeleveldatavariablesfinal.pdf
3. http://hab.hrsa.gov/manageyourgrant/adap/adapformfeb08.pdf
1. http://hab.hrsa.gov/manageyourgrant/files/clientleveldatafields.pdf
1. http://www.ccwdata.org/cs/groups/public/documents/document/ccw_max_user_guide.pdf
2. https://www.cms.gov/msis/downloads/msisdd2010.pdf
1. http://www.ccwdata.org/cs/groups/public/documents/document/ccw_userguide.pdf
2. http://www.ccwdata.org/summary-statistics/index.htm
3. http://www.ccwdata.org/data-dictionaries/index.htm
4. http://www.ccwdata.org/chronic-conditions/index.htm
5. http://www.ccwdata.org/analytic-guidance/index.htm
1. http://www.uab.edu/cnics/data-core/cnics-data-elements
1. http://www.ihs.gov/cio/crs/documents/crsv11/SelectedMeasuresV11_1.pdf
1. http://www.bop.gov/news/PDFs/mgmt_hiv.pdf
1. http://www.hudhre.info/documents/APR_HOPWA.docx
2. http://portal.hud.gov/hudportal/documents/huddoc?id=hopwa_caper_10312014.doc
3. http://www.hudhre.info/documents/FinalHMISDataStandards_March2010.pdf
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234 MONITORING HIV CARE IN THE UNITED STATES
APPENDIX TABLE 3-5 CD4 and Viral Load Reporting by HIV
Surveillance Reporting Area (as of June 15, 2010)
CD4 count (cells/µL)
Reportable Level Reportable Level
All Values <200
Alaska, Arkansas, California, Delaware, Florida, Alabama, Arizona,
Georgia, Hawaii, Illinois, Indiana, Iowa, Kentucky, Connecticut, Idaho, New
Louisiana, Maine, Maryland, Massachusetts,* Michigan, Jersey, New Mexico,
Minnesota, Mississippi, Missouri, Nebraska, New North Carolina, Ohio,
Hampshire, New York, North Dakota, Oregon, Pennsylvania, Rhode
South Carolina, South Dakota, Texas, Utah, Virginia, Island, Tennessee,
Washington, West Virginia, Wyoming Vermont, Wisconsin
District of Columbia
Guam, Puerto Rico U.S. Virgin Islands
Viral Load
Reportable Level Reportable Level
Any Result Detectable
Alaska, Arkansas, California, Colorado, Connecticut, Arizona, Idaho, Kansas,
Delaware, Florida, Georgia, Hawaii, Illinois, Indiana, Kentucky, Montana,
Iowa, Louisiana, Maine, Maryland, Massachusetts*, Nevada, North Carolina,
Michigan, Minnesota, Mississippi, Missouri, Nebraska, Ohio, Pennsylvania, Rhode
New Hampshire, New Jersey, New Mexico, New York, Island, Tennessee
North Dakota, Oklahoma, Oregon, South Carolina,
South Dakota, Texas, Utah, Vermont, Virginia,
Washington, West Virginia, Wisconsin, Wyoming
District of Columbia
Guam, Puerto Rico U.S. Virgin Islands
*As of January 2012.
SOURCES: Personal Communication, Amy Lansky, Centers for Disease Control and
Prevention, October 6, 2011; Massachusetts Department of Public Health, 2012.
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SOURCES OF DATA
Reportable Level
<500 No Reporting
Colorado, Kansas, Nevada, Oklahoma Montana
American Samoa; Marshall Islands;
Micronesia, FS; N. Mariana Islands; Palau
No Reporting
Alabama
American Samoa; Marshall Islands;
Micronesia, FS; N. Mariana Islands; Palau
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