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5
The Role of Health Information
Technology and Data System Integration
in the Collection of HIV Care Data
This chapter describes potential improvements in the collection of
HIV care and supportive services data from health information technology
(health IT) and data system integration. Specifically, the chapter addresses
how health IT can be utilized and configured to improve the collection of
comprehensive data describing the care experiences of people living with
HIV/AIDS (PLWHA) (statement of task question 7), and discusses models
and best practices in data system integration to make existing data systems
and core indicators interoperable (statement of task question 6). The chap-
ter ends with the committee’s conclusions and recommendations on these
aspects of its charge.
UTILIZATION AND CONFIGURATION OF HEALTH
INFORMATION TECHNOLOGY TO IMPROVE
THE COLLECTION OF HIV CARE DATA
Health IT generally refers to the various computer technologies that are
used by providers, consumers, payers, insurers, and other groups to manage
and transmit health information (PCAST, 2010). Some of the more com-
mon health IT applications are computerized physician order entry (CPOE),
clinical decision support (CDS), and electronic prescribing (Table 5-1).
These applications are often housed in an electronic medical record (EMR),
an electronic record of a patient’s health information created, managed, and
consulted by providers, or an electronic health record (EHR) that generally
has the same features as an EMR but conforms to nationally recognized
273
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274 MONITORING HIV CARE IN THE UNITED STATES
TABLE 5-1 Descriptions of Health IT Products and Functionalities
Product or
Functionality Description
Electronic health record An electronic record of health-related information on
(EHR) an individual that conforms to nationally recognized
interoperability standards and that can be created, managed, and
consulted by authorized clinicians and staff across more than
one health care organization
Electronic medical An electronic record of health-related information on an
record (EMR) individual that can be created, gathered, managed, and consulted
by authorized clinicians and staff within one health care
organization
Personal health record An electronic record of an individual’s health-related information
(PHR) that is managed, shared, and controlled by the individual. May
conform to nationally recognized interoperability standards.
Health-related information may be drawn from multiple sources
(e.g., providers, insurance claims, pharmacy data).
e-prescribing (eRx) Enables a physician to transmit a prescription electronically to
the patient’s pharmacy. Also enables physicians and pharmacies
to obtain information about the patient’s eligibility and
medication history from drug plans. May come with alerts for
drug-drug, drug-allergy, and drug-disease interactions
Computerized physician A computer-based system of ordering medications and other
order entry (CPOE) tests. Physicians enter orders into a computer system that can
have varying levels of sophistication. Basic CPOE ensures
standardized, legible, complete orders and thus primarily reduces
errors due to poor handwriting and ambiguous abbreviations
Clinical decision Any system designed to improve clinical decision making
support (CDS) related to diagnostic or therapeutic processes of care. Addresses
activities ranging from the selection of drugs or diagnostic tests
to detailed support for optimal drug dosing and support for
resolving diagnostic dilemmas. Often incorporated as part of
CPOE or EMR-EHR systems
SOURCE: Adapted from Detmer et al., 2008; HHS, 2008; Moiduddin and Moore, 2008.
interoperability1 standards and can be used by providers across more than
one health care organization (HHS, 2008). Personal health records (PHRs)
are electronic records of a patient’s health-related information that are con-
trolled by the patient and can be shared with others, such as providers and
family members. PHRs are usually web based so that patients may access
1 In health care, interoperability refers to the ability of different IT 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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THE ROLE OF HEALTH INFORMATION TECHNOLOGY
their information remotely. Some PHRs can be populated with information
from a variety of sources (e.g., provider EHRs, insurance claims, pharmacy
data) to provide a more complete picture of the patient’s health-related
information (Table 5-1) (CMS, 2012a; Detmer et al., 2008; HHS, 2008).
The full benefits of health IT cannot be realized without an infrastruc-
ture that supports the secure exchange of health information beyond an
individual provider or health care delivery system. Health information
exchange (HIE) enables the electronic sharing of patient-level health infor-
mation across organizations and health IT products (principally EHRs and
PHRs) using nationally recognized interoperability standards (HHS, 2008).
HIE is a solution to barriers to the exchange of health information across
organizations posed by the fragmented health care system (HHS, 2008; Vest
et al., 2011). HIE gives providers access to more accurate and complete
information on their patients and, thus, may help to improve the safety
and quality of care (CBO, 2008; Vest et al., 2011; Wright et al., 2010). A
number of regional health information organizations (RHIOs) across the
country have developed networks to enable secure HIE among local clini-
cians, provider organizations, pharmacies, laboratories, health departments
and other entities (Shapiro et al., 2011).
When used appropriately, health IT has the potential to generate sav-
ings. For example, health IT could result in savings by lowering the costs
of providing health care, eliminating unnecessary services (e.g., duplicate
tests), and improving care quality in a way that may reduce costs. Savings
may be internal in the form of reductions in the costs of providing care for
health care providers directly. Savings also can be external, meaning the
savings accrue beyond individual providers to other providers, patients,
health insurance plans, or others—for example, from increased ability of
participants to engage in HIE (CBO, 2008). As discussed below, compared
with large integrated health organizations, small provider groups may be
less likely to internalize the financial benefits from health IT because there
is less incentive for improvements in administrative efficiency and because
costs are distributed across a smaller number of providers and patients
(PCAST, 2010).
Uses of Health Information Technology for the Collection
of HIV Care Data and Management of HIV Care
Clinical data needed to monitor indicators of HIV care are often con-
tained in EHRs or EMRs. As discussed in Chapter 2, clinical data include
information on individuals’ health status, findings from examinations, and
medical history information. EHRs and EMRs also document patient de-
mographic information such as sex, date of birth, insurance status, and race
and ethnicity. Stand-alone and EHR- or EMR-embedded CPOE applica-
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276 MONITORING HIV CARE IN THE UNITED STATES
tions contain data on pharmacy, laboratory, and other types of provider
orders. E-prescribing features also provide prescription drug information.
Because the clinical data are maintained in an electronic format, they can
be more easily retrieved and transmitted. Some IT systems can be used to
compile and summarize information from patients’ medical records to iden-
tify trends in a specific population or to track compliance with clinical stan-
dards or other quality measures. They also may be used to generate reports
such as to identify no-show rates for HIV patients or to monitor trends in
laboratory test results. Such features can help HIV care providers comply
with mandated reporting requirements (HRSA, 2011). Integrated EHRs can
organize patient information across providers (within or across organiza-
tions) and facilitate faster distribution of data so that providers can obtain
up-to-date views of a patient’s health information (PCAST, 2010). This
is important for PLWHA who often receive care and supportive services
across several providers and organizations over the course of their illness.
Another benefit of EHRs and EMRs in HIV/AIDS care is supporting
research. EHRs and EMRs have become a rich source of data for both ret-
rospective and prospective cohort studies, which can improve understand-
ing of PLWHA and their health care. As discussed in Chapter 3, the CFAR
Network of Integrated Clinical Systems (CNICS) is an EMR-based research
network containing data collected at point of care on more than 23,000
PLWHA. Research using CNICS data has helped to inform several impor-
tant questions in HIV care, including, but not limited to, factors associated
with linkage to and retention in care and the comparative effectiveness of
different HIV treatment strategies (Kitahata, presentation to IOM, April
28, 2011; UAB, 2012).
Preliminary research from the Louisiana Public Health Information
Exchange (LaPHIE)—a partnership between the Louisiana Office of Public
Health and the Louisiana State University Health Care Services Division
(LSU HCSD)—shows that the electronic exchange of EMR and surveillance
data can be used to identify PLWHA who have not been linked to care or
who have fallen out of care (Herwehe et al., 2012). Using a secure bidirec-
tional HIE linking state public health surveillance data with medical record
data, LaPHIE sends alerts to LSU HCSD care providers when individuals
who have not received CD4 or viral load monitoring for more than a year
present to care for non-HIV-related conditions (Herwehe et al., 2012).
Over a 2-year period, LaPHIE issued alerts for 488 patient encounters and
identified, matched, and exchanged messages on 345 unduplicated PLWHA
who were in need of treatment. The majority of the individuals identified
followed up with care within the study period; 82 percent received one or
more CD4 counts within the 18-month follow-up period, and 62 percent
had at least one HIV specialty visit. Both providers and patients were ac-
cepting of the exchange. A patient acceptability evaluation showed that
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THE ROLE OF HEALTH INFORMATION TECHNOLOGY
patients preferred the sharing of their information to be limited to public
health authorities and health care providers when there is benefit to the
patient and/or the community. The evaluation also showed that the health
care delivery setting is the preferred environment for communication about
the need for follow-up, as opposed to community-based outreach methods
traditionally used by public health (Herwehe et al., 2012).
One limitation of EHRs and EMRs is that, like hard copy medical
charts, the completeness and quality of data they contain, and therefore
their usefulness for research and patient monitoring, depend on the input-
ting of data by users. Some research has shown data to be frequently miss-
ing from EMRs (Lau et al., 2011). Incomplete and inaccurate information
can also diminish the potential for improvements in patient safety and qual-
ity resulting from health IT. For example, drug alerts and CDS functions
will be of little use if the relevant data in the EMR or EHR to activate such
functions are not complete and accurate.
A data-related benefit of PHRs is that providers may use them to docu-
ment and verify a patient’s health-related information (e.g., in the EHR),
thus improving data quality (Detmer et al., 2008). PHRs may include clini-
cal data populated from a provider EHR, and some PHRs allow patients
to input information such as demographic and emergency contact infor-
mation, diagnoses, drug allergies, immunizations, and other information.
Some PHRs also include features that allow patients to schedule and receive
reminders about their appointments, refill prescriptions, research medical
conditions, and communicate with their providers. Like EHRs, many PHRs
conform to nationally recognized interoperability standards and therefore
can be used in HIE (HHS, 2008).
Because PHRs allow patients to view and manage their own health
information, they are thought to facilitate better patient engagement in care
(CHF, 2010; HHS, 2008; Kahn et al., 2010; McInnes et al., 2011).2 PHRs
may be especially useful to individuals with chronic conditions such as HIV
as well as for those with comorbidities because they help patients manage
information across multiple care providers, appointments, and medications
(HHS, 2009; Kahn et al., 2009, 2010). A recent study evaluated PHR us-
age patterns of 211 patients attending San Francisco General Hospital’s
HIV/AIDS clinic (Kahn et al., 2010). Data retrieved from the PHR website
log showed that participants commonly accessed their PHRs to view CD4
count and viral load information (891 visits by 110 persons, and 542 visits
by 104 persons, respectively) as well as office visits, medical conditions,
2 Adherence research has shown that patients, including HIV/AIDS patients, who perceive
themselves to be more highly engaged with their health care providers have better adher-
ence to medication, provider advice, and appointments (Bakken et al., 2000; Osterberg and
Blaschke, 2005).
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278 MONITORING HIV CARE IN THE UNITED STATES
and medications. Of 51 patients who completed a usage survey, 80 percent
agreed that the PHR helped them to manage their medical conditions (Kahn
et al., 2010). Results from a national consumer survey on health IT showed
that PHR users who had less education and lower incomes, and those with
chronic illnesses, derive the most value from PHRs (CHF, 2010). Web-based
PHRs may aid in continuity of care for PLWHA as they change providers
or relocate.
Electronic laboratory reporting (ELR), the electronic reporting of com-
municable diseases and laboratory test results to public health authorities
for surveillance, is another health IT tool that is relevant to the collection
of HIV-related data. As discussed in Chapter 2 of this report, several of
the data elements (e.g., HIV/AIDS cases, CD4 counts and viral load in-
formation) needed to estimate the committee’s core indicators come from
surveillance data. Evidence suggests that methods for electronic reporting
of communicable disease information facilitates more accurate and com-
plete reporting of data to public health authorities (CDC, 2011; Nguyen et
al., 2007; Overhage et al., 2008), while provider-initiated, manual systems
often provide delayed and inaccurate data with many omissions and errors
(Birkhead et al., 1991; Jajosky and Groseclose, 2004; Ward et al., 2005).3
A Special Projects of National Significance (SPNS)-sponsored project
identified key considerations in the adoption of health IT for HIV care
providers based on the experiences of 6 HIV care sites conducting com-
prehensive evaluations of health IT interventions between 2002 and 2005
(Magnus et al., 2007). The project encompassed care delivered to 24,232
clients by 700 providers. Each site was implementing a different type of
health IT ranging from a web-based information tool for HIV care provid-
ers to an application to allow HIV patients to complete a questionnaire on
medication adherence, depression, and substance abuse via touch screen
computers prior to meeting with their health care provider. The investiga-
tors identified 6 key considerations for IT adoption across the SPNS sites.
These were: programmatic capacity (e.g., assessment of computer resources
and existing IT infrastructure); elucidating stakeholder expectations of the
value added by IT; participation (the involvement of all key stakeholders in
the development of the IT plan); organization models (whether the IT effort
was pioneered by leadership, support staff, or was self-contained within a
specific HIV clinic); end-user types (assessment of the various ways that end
users will interact with the IT system); and consideration of the challenges
to adoption under different care models (see Box 5-1). The project also
showed that it is essential to have an evaluation process in place to monitor
3 Although there has been substantial progress in the use of electronic reporting, many
surveillance mechanisms still depend on manual data entry and submission (CDC, 2005;
Lazarus et al., 2009; Lober et al., 2003).
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BOX 5-1
Key Considerations for the Adoption of
Health IT by HIV Care Providers
Programmatic Capacity
Prior to implementation of new health IT strategies, it is important to assess
computer resources and explore existing IT infrastructure to see whether new
capabilities can be added in to it, rather than implementing a completely new sys-
tem. The IT intervention should be developed with future growth and sustainability
in mind. Selection of well supported software that protects the confidentiality of
patient data, is capable of addressing current and future compatibility standards,
and has ongoing technical assistance is also important.
Expectations
It is important to determine whether stakeholder expectations of the value
added by IT are realistic and address system needs, or barriers to IT utilization
may result. Understanding the reasons for suboptimal care, and the ability of IT to
improve them prior to implementation of the IT intervention, helps to ensure that
the IT will address system needs.
Participation
All key stakeholders, including providers, end users, ancillary staff, clients,
patients, and other community members, should be consulted and involved in the
IT creation and implementation processes.
Organizational Models
Grantees noted that IT interventions were implemented in one of three
models: (1) top-down, in which the administration identified IT as a means of
overcoming a systemic difficulty; (2) ground-up, in which users identified the need
for the program and were champions of its adoption; or (3) stand-alone, where
the intervention was self-sufficient in a preexisting context of care, not requiring
extensive organizational support.
End-User Types
End users often interact with the same IT program in different ways. There-
fore, during the preadoption phase, it is important that each potential user be
consulted and their usage assessed to understand the relative value of the system
for them and how they expect to use it. This information can help to identify the
scope of the IT or, if the assessment determines that the proposed IT is not an
ideal solution, determine that other changes may be necessary.
continued
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280 MONITORING HIV CARE IN THE UNITED STATES
BOX 5-1 Continued
Challenges
It is important to be aware of challenges to the implementation of IT under a
particular organizational model. For example, in top-down models, frontline staff
and providers may resent a particular system being imposed upon them and resist
using the system, while in a ground-up model IT may not have administration sup-
port and resource commitment for sustainability. Knowledge of the model at work
can be used to address barriers to success of the IT intervention.
SOURCE: Magnus et al., 2007.
IT use and its impact on patient outcomes. Feedback from the evaluation
can improve IT implementation and provide data that may assist with sus-
tainability (Magnus et al., 2007).
Challenges to the Adoption of Health Information Technology
Despite its potential benefits, evidence suggests that adoption of health
IT is occurring at a slow pace in settings where PLWHA receive care, such
as physician offices, hospitals, and community health centers (CHCs). Data
from a nationally representative survey of office-based physicians show that
25 percent of physician offices were using a basic EHR or EMR system in
2010, up from 22 percent in 2009. Ten percent of physicians were using a
fully functional system in 2010, compared with 7 percent in 2009 (Hsiao
et al., 2010).4 A report on progress in EHR adoption by acute care, non-
federal hospitals in the first year following passage of the 2009 American
Recovery and Reinvestment Act (ARRA; P.L. 111-5), which authorized
incentive payments through Medicaid and Medicare to providers who
implement certified EHRs, found only small gains in EHR adoption. The
proportion of hospitals (N=3,101) meeting criteria for a basic EHR rose
from 7.2 to 9.2 percent between 2008 and late 2009 while the proportion
4 A “basic” EHR or EMR system as defined in the study has functionalities for patient
history and demographics, patient problem lists, physician clinical notes, medications taken
by patients, computerized orders for prescriptions, and viewing laboratory and imaging
results. A “fully functional” EHR or EMR system has each of the basic functionalities as
well as functionalities for prescription and test orders, warnings of drug interactions or
contraindications, highlighting of out-of-range test levels, and reminders for guideline-based
interventions or screening tests (Hsiao et al., 2010).
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THE ROLE OF HEALTH INFORMATION TECHNOLOGY
of hospitals meeting criteria for a comprehensive EHR increased from 1.5
to 2.7 percent. Hospitals likely to serve more disadvantaged populations
(e.g., critical access, public, nonteaching, and rural hospitals) were among
the least likely to have adopted even a basic EHR in the 12 months preced-
ing the survey. Eighty-nine percent and 74 percent of hospitals, respectively,
did not have key meaningful use functions for engagement in HIE and the
ability to report quality measures to the state or to the Centers for Medi-
care and Medicaid Services (CMS) (Jha et al., 2010). In a 2008 survey of
362 federally qualified health centers (which include CHCs), 23 percent
responded that they use an “all-electronic” EHR. None of the health centers
met the criteria for a fully functional EHR (Lardiere, 2009).5 The practice
of HIE, or the exchange of health care information across organizations,
also remains the exception rather than the rule (PCAST, 2010; Vest, 2009;
Vest et al., 2011; Wilcox et al., 2006). The national health IT consumer us-
age survey mentioned above found that just 7 percent of respondents were
using a PHR (CHF, 2010).
Part of the explanation for the lack of broad adoption and use of health
IT is linked to the organizational and economic structure of the U.S. health
care system (PCAST, 2010). Many physicians, including those who provide
care to PLWHA, practice in small groups and are reimbursed for care on
a fee-for-service basis. Physicians who practice in this type of environment
may not garner the benefits of health IT, such as increased sharing of pa-
tient information, enhanced coordination of care, or the ability to aggregate
care data. Therefore, there is little incentive for these providers to invest
in health IT. Adoption of health IT has occurred at a faster pace in large
health care organizations, such as in the Veterans Health Administration
(VHA) and Kaiser Permanente, that directly gain from health IT and have
a greater incentive to provide care efficiently and reduce duplication of
services. Large organizations are also better situated to shoulder the costs
of implementing health IT, since costs are spread across a larger number of
patients and providers (PCAST, 2010).
Besides the costs of installing and maintaining health IT systems, a
number of other barriers and challenges to the adoption of health IT have
been described in the research literature. These include the inability to
integrate new and existing systems (Lardiere, 2009; PCAST, 2010); con-
cerns about the security and privacy of data (PCAST, 2010); productivity
loss (e.g., during transition to a new EHR) (Lardiere, 2009; PCAST, 2010;
Poon et al., 2006; Reardon and Davidson, 2007; Shields et al., 2007); lack
of support from providers (Bhattacherjee and Hikmet, 2007; Lardiere,
5 “Fully functional” was defined as having functionalities for collection of patient
demographic information, electronic prescribing, computerized physician order entry, clinical
notes, clinical decision support, and public health reporting (Lardiere, 2009).
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282 MONITORING HIV CARE IN THE UNITED STATES
2009; Liu et al., 2011); and perceived incompatibility with work processes
(Bhattacherjee and Hikmet, 2007; PCAST, 2010). Some providers may be
concerned about the potential liabilities associated with use of health IT
and participation in HIE. For example, it has been suggested that since
integrated EHRs can store large amounts of instantly accessible informa-
tion on several aspects of care, providers may be more likely to be found
responsible for missing critical details in a given patient’s EHR that affect
treatment decisions (Sittig and Singh, 2011).
Providers who care for the underserved may face additional barriers
to the implementation of health IT. In CHCs, which disproportionately
serve patients who are low income, for example, the integrated service
approach to care may make health IT implementation more complicated
(Moiduddin and Moore, 2008). Health IT can improve care quality when
used effectively. Therefore, these unique challenges must to be addressed
to ensure that health disparities are not exacerbated by uneven adoption
and use of health IT.
The benefits of health IT, both within a practice and for purposes of
monitoring care on a broader scale, may not be evident to many providers.
Education on possible functions and benefits of health IT is important for
implementation and use (Gibbons, 2011; Samentaray et al., 2011; Torda et
al., 2010). Surveys of physicians have reported that financial incentives for
the purchase and use of health IT systems, receipt of technical assistance,
and protections from personal liabilities would facilitate adoption and use
(DesRoches et al., 2008; Patel et al., 2011). There may be a particular need
for improved incentives to smaller providers who are less likely to internal-
ize the financial benefit from health IT.
Although adoption of health IT has occurred at a slow pace thus far,
the financial incentives and technical assistance being provided as a result
of the ARRA could help to promote broader use of EHRs among HIV pro-
viders in coming years. The Health Information Technology for Economic
and Clinical Health (HITECH) Act, a component of the ARRA, supports
adoption and use of EHRs by authorizing incentive payments through
Medicare and Medicaid, major payers of care for PLWHA, to physicians
and hospitals that use EHRs and demonstrate their “meaningful use” (Jha
et al., 2010).6 The three main components of meaningful use for the first
phase of the HITECH Act, which began in 2011, are the use of certified
6 Under the Medicare EHR incentive program, eligible health professionals can receive as
much as $44,000 over a 5-year period. Incentive payments for hospitals and critical access
hospitals (CAHs) are based on a number of factors and begin with a $2-million base payment.
Under the Medicaid EHR incentive program, eligible health professionals can receive up to
$63,750 over 6 years. As under the Medicare program, incentive payments for hospitals and
CAHs under the Medicaid program are based on a number of factors and begin with a $2-
million base payment (CMS, 2012a).
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EHRs (1) in a meaningful manner (e.g., for electronic prescribing); (2) for
secure electronic exchange of health information to improve the quality of
health care; and (3) to submit clinical quality and other measures (CMS,
2011). Because providers must use an EHR that has been certified to sup-
port objectives of meaningful use to qualify for the incentive, a possible
outcome of meaningful use is the increased development of functions in
EHRs to document various clinical quality measures and other health
data.7,8 HITECH Act programs also offer technical support to providers
that are in particular need of assistance (e.g., solo and small group prac-
tices, CHCs, critical access hospitals) to attain adoption and meaningful
use of EHRs, including assistance with implementation, workforce training,
and HIE (ONC, 2011a).
The array of data contained in health IT systems is largely limited to
clinical care data. Resources to support effective use of health IT are par-
ticularly lacking among mental health and supportive services providers
who were not eligible for EHR meaningful use incentives under ARRA
(SAMHSA, 2011). Efforts to expand the use of health IT by behavioral
health providers and to address barriers to the inclusion of behavioral
health information in HIE would improve the availability of data to moni-
tor indicators for referral for and receipt of mental health and substance
abuse services among people with diagnosed HIV infection, as well as for
other populations (SAMHSA, 2011).
Data Privacy and Security Considerations
As noted previously, some of the existing ambivalence about integrating
health IT into the health care system is related to concerns about privacy
7 The criteria by which meaningful use of EHRs will be determined is being rolled out in
three phases. Phase 1 (2011 and 2012) “sets the baseline for electronic data capture and
information sharing” (CMS, 2011). It is anticipated that future stages of meaningful use
will be increasingly rigorous. For example, by 2015, in order to qualify for meaningful use
of EHRs, providers will have to demonstrate greater use of decision support tools, higher
levels of information exchange, and improvement in care coordination and patient outcomes
(PCAST, 2010).
8 Since the HITECH Act was passed, the Office of the National Coordinator for Health
Information Technology (ONC) has moved forward on several additional activities that will
help to improve the health IT infrastructure. One of these activities, the Nationwide Health
Information Network (NwHIN), is composed of standards, services, and policies to enable
secure health information exchange over the Internet. The NwHIN is meant to help achieve
the goals of the HITECH Act by enabling “health information to follow the consumer, be
available for clinical decision making, and support appropriate use of health care information
beyond direct patient care so as to improve population health” (ONC, 2011b). This project
has convened stakeholders and created an appropriate forum for the discussion of options to
improve the health IT infrastructure (PCAST, 2010).
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outside of integrated delivery networks and specialty clinics. A final lesson
is learned from research registries. Many registries require manual abstrac-
tion of data from patient records at the institutions providing data. Where
this information is available electronically, registry reporting can be more
efficient, but only when the data are collected consistently. Indicators of
care are more efficient when they can be based on data that are collected
consistently and are available electronically.
As noted in the ONC’s Federal Information Technology Strategic Plan
for 2011–2015, future stages of meaningful use for EHRs may become more
rigorous—for example, by requiring that providers not only adopt health IT
but use it to exchange health information (ONC, 2011a). If implemented as
planned, these changes could help to lay the groundwork for increased data
system interoperability and to simplify the assessment of the state of HIV
care at the national level. The federal government is currently developing a
standards and interoperability framework (S & I Framework) to broaden
interoperability across different organizations and federal agencies.10 To
support health IT adoption and information exchange for public health
and populations with unique needs, ONC is working with CDC, CMS, the
National Institutes of Health (NIH), the Food and Drug Administration
(FDA), the Assistant Secretary for Preparedness and Response (ASPR), and
the Health Resources and Services Administration (HRSA) to ensure that
meaningful use of certified EHRs supports the needs of public health agen-
cies. In particular, these agencies are working to ensure that EHRs include
capabilities to submit electronic syndromic surveillance data, immunization
registries, and electronic lab reporting (as based on current stage 1 mean-
ingful use criteria). This may help set the stage for two-way communication
between providers and public health agencies (ONC, 2011a).
Data System Linkage
One means of data system integration is data linkage. Data linkage
refers to the bringing together of information from one or more disparate
data sources for the same individual, family, event, or place, removing
the need to extract data from several sources. Data linkage has been used
frequently for medical and population health research (Brook et al., 2008;
Herzog et al., 2007; Jutte et al., 2011; Karmel and Rosman, 2008). Rather
than initiating new data collection efforts, linkage allows researchers to
10 The framework will focus on identifying transport standards (that enable one provider to
exchange data with another provider, or one system with another system, securely); content
standards (that allow data to be packaged or “read” in a way that is useful for the provider);
and vocabulary and terminology standards and value sets (to achieve semantic interoperability
at the level of individual data elements) (ONC, 2011a).
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make better use of data that are already collected for other purposes (e.g.,
claims or registry data) (Jutte et al., 2011). Data linkage can improve the
cost-effectiveness of data collection, can reduce the amount of time needed
for data collection in research, and has the potential to improve the quality
of the data collected—for example, through the detection of duplications
that otherwise may not have been identified (Herzog et al., 2007; Holman
et al., 2008).
Methods for record linkage are described elsewhere in the research lit-
erature (see Fellegi and Sunter, 1969; Herzog et al., 2007). In general, link-
age is achieved using individual identifiers to reliably identify an individual
across two or more data systems (Jutte et al., 2011; Tromp et al., 2011).11
Identifiers may include Social Security numbers, names, dates of birth, zip
codes, and other information. The use of a unique individual identifier (e.g.,
Social Security number, patient medical record number) across data sources
can help to overcome problems of inaccuracies in identification of matches
across systems based on other types of identifiers. However, in the United
States, unique identifiers are not applied ubiquitously across the various
sources of care and care coverage for PLWHA.
Some of the best examples of successful data linkage while maintain-
ing patient privacy and confidentiality come from the international realm
(Jutte et al., 2011). For the most part, countries that have demonstrated
successful data linkages for most of their residents have single-payer health
care systems that do not face the same administrative and legal barriers
to sharing of health information encountered within the U.S. health care
system (see Chapter 4). In Sweden, the MigMed2 database was developed
by linking data from several national registers, including those containing
population, death, hospital discharge, multigenerational (i.e., identities of
the biological and adopted parents), and immigration data. The national
10-digit civic registration identification number that each person uses for
her or his lifetime are used to link individual-level data across registers.
Prior to inclusion in the database, the identification numbers are replaced
with serial numbers to ensure anonymity. MigMed2 has been used for re-
search in a number of areas including, but not limited to, prostate cancer
mortality and patterns of breast cancer survival within families (Hemminki
et al., 2008; Ji et al., 2010; Li et al., 2011). Population Data BC (British
Columbia), formerly the British Columbia Linked Health Database, con-
tains data on nearly every person in British Columbia and links individual-
level health care utilization, population demographics and vital statistics,
11 The two primary methods for data linkage are deterministic linkage and probabilistic
linkage. In deterministic linkage, a predefined subset of linking variables have to agree to be
considered a match and linked. In probabilistic linkage, record pairs are linked based on the
probabilities of agreement of a set of identifiers (Tromp et al., 2011).
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290 MONITORING HIV CARE IN THE UNITED STATES
cancer registry, and occupational and early childhood information for use
in research. Population Data BC uses identifiers (e.g., names, birth dates)
to link data, but it does not store data in a linked format, and data are
reported only at an aggregate level to protect confidentiality. This resource
has been used by researchers to identify determinants of health for the en-
tire population of BC as well as for health disparities research (Population
Data BC, 2012). Other international examples of successful record linkage
for population-based research include the Scottish Record Linkage System,
the Oxford Record linkage Study, and the Western Australia Data Linkage
System (Holman et al., 2008; Jutte et al., 2011).
In keeping with the fragmented nature of the U.S. health care system,
a number of successful examples of data linkage in the United States have
occurred more locally. One example involving PLWHA is the HIV/AIDS
Cancer Match Study, which uses anonymized data collected by state and
regional HIV/AIDS and cancer registries to study cancer in PLWHA. The
study data are pulled from computerized linkages between databases that
are maintained by study sites in 13 states and the District of Columbia
(NCI, 2012). Data from the linked registries have helped to identify cancers
that occur more often among PLWHA; describe changes in cancer burden
among PLWHA over time; and identify predictors of cancer outcomes for
PLWHA (Shiels et al., 2010, 2011a,b; Simard et al., 2011). The results
from the study provide important information on the impact of HIV on
cancer risk and trends in morbidity and mortality to the National Cancer
Institute and other policy makers (NCI, 2012). Data linkage has been used
in several HIV-related research studies carried out in the United States to
improve the completeness of data for surveillance and for monitoring HIV
care. A study of linkage of HIV/AIDS surveillance data in the District of Co-
lumbia Department of Health with death registries showed that the linkage
improved the accuracy of estimation of the prevalence of individuals living
with HIV/AIDS (CDC, 2008). In the LaPHIE study described earlier in this
chapter, state public health surveillance data was linked to real-time EMR
data to successfully identify PLWHA who had fallen out of care (Herwehe
et al., 2011).
Efforts are under way to improve data linkage among sources of care
and care coverage for PLWHA. As discussed in Chapter 3, the AIDS Drug
Assistance Program (ADAP) Data Report will begin to capture client-level
data during the April 1 through September 30, 2012, data collection period
and will employ a unique client identifier using the same algorithm and
encryption process as is currently used for the Ryan White Services Report.
Eventually the systems will be merged to link data for Ryan White clients
who are receiving ADAP services (Personal communication, Faye Malitz,
Health Resources and Services Administration, October 25, 2011). In 2009,
the CMS developed a database of linked Medicaid and Medicare data to
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291
THE ROLE OF HEALTH INFORMATION TECHNOLOGY
improve tracking and coordination of care for individuals who are enrolled
in both programs (CHCS, 2010).
Further enhancements in linkages among data systems could enhance
the completeness of data for monitoring HIV care. Examples include, but
are not limited to, linkage of surveillance systems that collect CD4 and viral
load information to other public health data systems. For example, linking
surveillance data with the Medical Monitoring Project (described in Chap-
ter 3) could enhance understanding of the transition from newly diagnosed
HIV infection to chronic clinical outcomes. Other linkages to more com-
prehensive data collection systems such as CNICS and the North American
AIDS Cohort Collaboration on Research and Design ([NA-ACCORD] de-
scribed in Chapter 3) could provide rich data but may require new data-use
agreements given that the data for these studies were obtained via informed
consent.
CONCLUSIONS AND RECOMMENDATIONS
• When used effectively, health IT can facilitate the collection of
health care data and directly improve patient care. Although little
research has been conducted on the use and configuration of health
IT for the collection of HIV care data in particular, general im-
provements in the collection and exchange of data resulting from
health IT would increase the availability of data to monitor HIV
care. Education for HIV care providers on the potential uses and
benefits of health IT for their own practices, technical assistance,
and financial incentives (including, but not limited to, that being
offered to providers who demonstrate meaningful use of EHRs
under the HITECH Act) could help to promote more widespread
use of health IT.
• Increased exchange of health-related information among providers
of HIV care and supportive services has the potential to improve
care coordination and longitudinal tracking of care. Some inte-
grated health care systems, such as the Veterans Health Administra-
tion and Kaiser Permanente, effectively manage patient information
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 identi-
fied 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.
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292 MONITORING HIV CARE IN THE UNITED STATES
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 lim-
ited to, state and local health departments and government agen-
cies or community-based organizations funded to provide medical
care, substance abuse and mental health services, and housing and
other supportive services.
• Interoperability—the ability of different IT systems and software
applications 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 Ser-
vices and the Office of the National Coordinator for Health Infor-
mation Technology should provide technical assistance and policy
guidance to state and local health departments, clinical providers,
and other agencies serving individuals with HIV to improve the
interoperability of data systems relevant to monitoring HIV care
and supportive services.
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