Milberg JA, J Am Med Inform Assoc 2016;23:1190–1194. doi:10.1093/jamia/ocv212, Brief Communication
Development, use, and integration of a
nationally-distributed HIV/AIDS electronic
health information system
RECEIVED 31 August 2015
REVISED 18 November 2015
ACCEPTED 23 December 2015
PUBLISHED ONLINE FIRST 23 April 2016
John A Milberg
ABSTRACT
....................................................................................................................................................
Background The management of HIV infection requires extensive, longitudinal information record-keeping and coordination to ensure optimal
monitoring and outcomes of care and treatment.
Objective Agencies funded by The Ryan White HIV/AIDS Treatment Modernization Act are increasingly required to monitor the quality of their HIV
care and generate reports for funding agencies. To assist in their data collection and reporting capacity, the HIV/AIDS Bureau in the Health
Resources and Services Administration released its first version of a software application called CAREWare in 2000.
Methods This report describes the development of the application, the agencies that use it, how it is used, and overall satisfaction. The role of
CAREWare in the larger health information technology landscape affecting HIV primary care providers is also discussed.
Results and Conclusion CAREWare has evolved significantly in functionality and use, including the capacity to run in a real-time network connecting multiple service providers, generate performance measures, and import data in multiple formats. The application is the source of over half of
the Bureau s data, is used regularly by most providers and is installed in nearly every state. Ongoing enhancements will be essential to ensure that
CAREWare stays current in a rapidly-changing environment of health information technology and data exchange.
....................................................................................................................................................
Keywords: HIV/AIDS care, electronic health information systems, quality of care
BRIEF COMMUNICATION
INTRODUCTION
CAREWare is a longitudinal electronic patient health information system designed to assist providers of HIV/AIDS care in a range of daily
clinic, monitoring, quality, and reporting activities.1 The application
was initially released in 2000 to assist agencies receiving funds
through the Ryan White HIV/AIDS Treatment Modernization Act of
2006 funded by the US Department of Health and Human Service’s
Health Resources and Services Administration (HRSA).2 Since then,
CAREWare has evolved into a comprehensive health information system that can run as a stand-alone installation or a fully networked application connecting multiple care providers. Use of the software is not
mandated, but it has been adopted widely in the United States and in
each of the last four years has been used by just over half of funded
providers to submit their year-end data. We discuss why the application was developed, outline its main features, describe the users, and
present the results of a recently completed user survey. Finally, we
discuss how CAREWare fits into the larger health information technology landscape.
METHODS
Information for this report is derived from two sources. The first source
is the mandated, year-end, client-level Ryan White Services Report or
RSR submitted by each funded provider or grantee.3 The second
source is a customer satisfaction survey completed in July 2014.
Responses were received from 466 of 926 agencies (50.3%) that had
used CAREWare in 2013 to generate their RSR.4
Origin and Demand
After Medicaid and Medicare, The Ryan White HIV/AIDS Program is the
largest source of funding for care and treatment in the United States for
individuals infected with HIV, and who are either uninsured or underinsured.5 Agencies that receive funds and provide client services are
required to submit to HRSA a year-end client-level database in a standardized format that includes an encrypted, unique client identifier, basic
demographic information, the type and number of services received, and
selected clinical information related to HIV/AIDS care. Client-level reporting was initiated in 2010. In 2013, the program served 505 887 HIV-positive individuals which represents 55% of all HIV-positive persons
estimated by the Centers for Disease Control (CDC) who know their HIV
status in the United States6; this number was down slightly in 2014 to
492 000 clients.
CAREWare was first released in 2000 to provide to HRSA grantees
and providers of care a free and easy-to-use software application that
performed basic functions focused on their (then) aggregate reporting
requirements. The earliest versions captured basic client demographics, services, and limited clinical information. The application
also contained a custom report generator that allowed users to query
the database. In addition to being free of charge, with free technical
support, early users adopted CAREWare, because it generated the required year-end report. Agencies either lacked a software application
that produced this report or had paper-based systems that were cumbersome and made tallies and summaries for reporting extremely difficult. As determined from the early aggregate data reports prior to
2009, CAREWare was used by 12–20% of providers.
Significant Modifications
CAREWare was modified significantly in 2003–2004 to include a detailed clinical module to capture longitudinal information regarding vital
signs, medications, screening tests and immunizations, diagnoses of
medical conditions, and a location to store case notes and subjective
Correspondence to John Milberg, MPH, Parklawn Building, Rm 09N 186A, 5600 Fishers Lane, Rockville, MD 20857, USA; jmilberg@hrsa.gov. For numbered affiliations see end of article.
Published by Oxford University Press on behalf of the American Medical Informatics Association 2016. This work is written by a US Government employee and is in
the public domain in the US. For Permissions, please email: journals.permissions@oup.com.
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Milberg JA, J Am Med Inform Assoc 2016;23:1190–1194. doi:10.1093/jamia/ocv212, Brief Communication
Importing Data and Interoperability
Critical to the adoption and use of health information systems for
chronic conditions such as HIV infection is the capacity to import
large volumes of data without overwhelming data entry personnel
and ensuring that it is timely and accurate. Three features in particular were added in the last 5 years to address this issue: (1) parsing
of HL-7 formatted laboratory data from the main commercial labs
and electronic importing of Admission, Discharge, and Transfer
feeds; (2) a provider data import module that covers all fields in
CAREWare, including those customized by users (the import file
must be formatted in a specific manner)11; and (3) a data translation
module that enables import of flat, Excel, or comma separated value
format (CSV)-formatted files. Each of these modules expands the interoperability of CAREWare. The data translation module addresses
the common and important problem of importing data from commercial electronic health records (EHRs) and simplifies this process considerably. This latter feature has also enabled direct connection with
the CDC’s electronic HIV/AIDS reporting system so that states can
begin to download surveillance and lab test data into CAREWare and
track client services more effectively. A similar connection with
Housing and Urban Development data was also initiated to address
policy issues regarding housing and outcomes in HIV care.12
Customization
The ability to create fields, without requiring complex programming
modifications, became an important feature to promote user acceptance. Custom fields of any data type can be created throughout the
application, including the ability to attach scanned or other documents
to specific clients, eg, privacy notices for HIPAA, or service eligibility
documents, or perhaps image files (photographs). In addition, the application has a form designer that allows users to drag and drop fields
and customize their own data entry screens.
Use of Standard Codes
Wherever possible, CAREWare employs standard code sets. In the diagnosis module, International Classification of Diseases (ICD)-9 codes
are used and in the fall of 2015, ICD-10 codes were added. The medications module uses generic and brand names, and in the AIDS Drug
Assistance Program module National Drug Code (NDC) codes are
Figure 1: CAREWare Performance measures module screenshot.
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BRIEF COMMUNICATION
observations on patient care and follow-up. These modifications were
prompted by increased input from users and a growing demand broadly
for improved evidence-based assessment of the quality of care being
provided to clients with HIV/AIDS. Expanded features were also sought
so that multiple functions could be performed within one application and
potentially eliminate burdensome double data entry into multiple systems, and enable easy generation of reports that would help pinpoint
areas of need with regard to client services and disparities in care.
In 2004, CAREWare was rebuilt in an entirely new platform using VB
R
C version of CAREWare
dotNet and SQL ServerV
: The earlier MS-AccessV
was not able to handle increased database sizes, was subject to database corruption, and was not adequate for network installations beyond
local area network setups with a small number of users. The dotNET
version was designed so that it could be scaled to any configuration,
from single stand-alone installations to local area network setups with
multiple users in one facility, to a full real-time network capable of sharing client-level information among multiple providers.7
CAREWare was upgraded further in 2008 to include a performance
measures module that enables users to create their own and run the
Bureau’s measures designed to monitor essential aspects of HIV
care.8 The module generates numerators and denominators to produce a performance “rate,” and includes functionality to “drill down,”
and examine the individual clients that do not meet the performance
criteria and, therefore likely, require follow-up (Figure 1). This feature
most closely models the “meaningful use” criteria outlined by the
Centers for Medicare/Medicaid Services.9 Performance measures (and
all custom reports) can be exported in XML to other users and enable
the Bureau and users to rapidly disseminate their own set of measures
for use in a number of quality of care initiatives and ensure consistency and standardization in measurement calculation across providers. These performance measures are also central to tracking the
goals established by the President’s National HIV/AIDS Strategy.10
Milberg JA, J Am Med Inform Assoc 2016;23:1190–1194. doi:10.1093/jamia/ocv212, Brief Communication
Table 1: Total Ryan White Services Report provider data submissions, number of clients by State, and the percent generated by CAREWare, 2014
State/
territory/
district
Total no.
of Providers
submitting
a Ryan
White
Services
Report
Percent (N)
of Providers
using
CAREWare
Total
Clients
reported
Percent (N)
of clients
submitted
by
CAREWare
Alaska
4
75.0 (3)
679
75.6 (513)
Alabama
15
60.0 (9)
10 434
31.2 (3255)
Arkansas
4
100 (4)
3267
100 (3267)
Arizona
19
100 (19)
11 757
100 (11 757)
California
202
5.0 (10)
73 632
3.4 (2503)
Colorado
25
48.0 (12)
10 728
34.1 (3658)
Connecticut
49
100.0 (49)
9011
100 (9011)
District of
Columbia
24
91.7 (22)
9506
99.8 (9487)
Delaware
5
100 (5)
2664
Table 1: Continued
Total
Clients
reported
Percent (N)
of clients
submitted
by
CAREWare
State/
territory/
district
Total no.
of Providers
submitting
a Ryan
White
Services
Report
Percent (N)
of Providers
using
CAREWare
New York
164
9.8 (16)
80 311
6 (4819)
Ohio
34
61.8 (21)
17 085
29.2 (4989)
Oklahoma
4
100 (4)
3346
100 (3346)
Oregon
12
100 (12)
5110
100 (5110)
Pennsylvania
82
93.9 (77)
38 604
94.1 (36 326)
Puerto Rico
50
98 (49)
18 805
97 (18 241)
Rhode Island
3
66.7 (2)
2226
27.7 (617)
South Carolina
28
21.4 (6)
14 669
11 (1614)
South Dakota
2
50.0 (1)
508
47 (239)
Tennessee
39
94.9 (37)
16 967
68 (11 538)
100 (2664)
Texas
77
5.2 (4)
52 169
4.7 (2452)
3
100 (3)
1722
100 (1722)
BRIEF COMMUNICATION
Florida
103
78.6 (81)
97 154
68.8 (66 842)
Utah
Georgia
32
96.9 (31)
26 911
94.9 (2559)
Virginia
38
68.4 (26)
12 302
84.9 (10 444)
Guam
1
100 (1)
27
100 (27)
Virgin Islands
2
100 (2)
255
100 (255)
3
100 (3)
722
100 (722)
Hawaii
8
0
1439
0
Vermont
Iowa
10
100 (10)
1600
100 (1600)
Washington
28
89.3 (25)
8073
67.3 (5433)
11
36.4 (4)
5398
25.3 (1366)
Idaho
7
100 (7)
768
100 (768)
Wisconsin
Illinois
55
70.9 (39)
27 541
60.2 (16 580)
West Virginia
3
100 (3)
832
100 (832)
57.4 (4137)
Wyoming
1
100 (1)
173
100 (173)
Indiana
13
92.3 (12)
7208
Kansas
9
0
2193
0
Kentucky
7
100 (7)
4225
100 (4225)
Louisiana
32
87.5 (28)
20 401
86.1 (17 565)
Massachusetts
58
20.7 (12)
16 941
14.4 (2440)
Maryland
55
56.4 (31)
16 906
30.4 (5139)
Maine
9
88.9 (8)
1544
98.6 (1522)
Michigan
35
100 (35)
12 868
100 (12 868)
Minnesota
18
94.4 (17)
7374
76.4 (5634)
Missouri
26
0
15 439
0
Mississippi
12
100 (12)
5563
100 (5563)
Montana
2
100 (2)
400
100 (400)
North Carolina
61
98.4 (60)
19 450
97.7 (19 003)
North Dakota
13
0
220
0
Nebraska
5
40.0 (2)
723
16.9 (122)
New Hampshire
6
50.0 (3)
1212
82.3 (997)
New Jersey
98
46.9 (46)
24 721
47.8 (11 817)
New Mexico
6
83.3 (5)
3027
77.2 (2337)
Nevada
17
47.1 (8)
6356
54.1 (3439)
(continued)
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available. Some providers use Current Procedural Terminology codes
to track client services; however, because those codes are proprietary,
they are not distributed with the application.
Number of Users and Client Records
In 2014, 886 of 1629 funded agencies – 54.4% – used CAREWare to
generate their RSR data report. This proportion has been steady since
2011. The next largest system contributing data is an application developed and mandated by the States of California and Texas and was
responsible for 206 (12.6%) of all data submissions. In 2014, 364 630
client records were submitted from the 886 providers of care that
used CAREWare. The table and graph summarize, by State, the total
number of providers submitting RSR data in 2014, the percent and
number generated by CAREWare, and the total number of client records reported (Table 1 and Figure 2).
Where Used
In 2014 CAREWare was used in 46 states, Puerto Rico (P.R.),
Washington D.C., Guam, and the US Virgin Islands; in 19 jurisdictions
it was the source of 100% of data submissions. The largest user is
the State of Florida, where 81 providers of HIV care submitted 66 842
client records from CAREWare installations in 2014. In addition, 20
states and Washington, D.C. submitted client-level data for their state
AIDS Drug Assistance Program using CAREWare.
Milberg JA, J Am Med Inform Assoc 2016;23:1190–1194. doi:10.1093/jamia/ocv212, Brief Communication
Figure 2: Number of Client records reported by CAREWare users, by State, 2014.
Network Setups
As noted, CAREWare can be configured to run under a wide area network setting with multiple agencies connected to a central server with
one database. Providers connected in this manner can elect to share
data on clients that they all share in common, on a read-only basis;
one agency can never edit or change another’s data entered for a client that they share and clients themselves can opt out of having their
data shared among the agencies from which they receive services in
the network. Currently, at least 15 states, D.C. and P.R. run CAREWare
on a network, the largest being the Florida installation. A CAREWare
network established in rural North Carolina was found to improve services in a region with a dispersed and hard-to-reach patient population13 and was also associated with improvements over time in viral
suppression rates and uptake of supportive services.14
Survey Results: User Satisfaction
The first comprehensive user survey was completed in July 2014. A
representative from half of all providers that used CAREWare in 2013
to submit their RSR completed an online survey (469 of 928).
Seventy percent of respondents reported using the application for >5
years. Seventy-seven percent indicated that they use CAREWare on a
daily basis in their facility; another 11% use it weekly. On a scale of 1
(dissatisfied) to 10 (very satisfied), respondents reported general overall satisfaction in the past year with the application (74.3% rated it as
6 or greater) and found CAREWare particularly effective at producing
their HRSA-required reports (79.5% rated it as 6 or greater and 39%
as a 9 or 10). On all questions regarding the helpdesk reported a high
degree of satisfaction (median score of 8). However, users did report
difficulty using certain features of the application, in particular building
custom reports and performance measures, and recommended more
regular training in these areas and improved user guides.
DISCUSSION
Following extensive input from users and demands to better monitor
and evaluate the quality of HIV care, CAREWare has evolved in the last
15 years from a more narrowly-focused application into a comprehensive, interoperable electronic longitudinal HIV patient information system. It is used by more than half of Ryan White HIV/AIDS Programfunded providers in the United States, receives electronic imports of
HL-7 and other standardized data, and in a number of states and cities
is configured as a full network with data sharing across HIV providers.
While the initial impetus for its use was primarily reporting to HRSA,
enhanced functionality, ability to generate performance measures,
ease of customizability and interoperability, and overall reliability have
greatly expanded the application’s utility so that 77% of survey respondents reported that they use the application on a daily basis.
CAREWare networks, connecting providers of care in large geographic
areas, contribute to better care coordination, patient follow-up, and
more complete and efficient data reporting.13–15
A report published recently in JAMIA outlined critical, ongoing gaps
in existing EHR functionality in primary care settings.16 For many providers of HIV/AIDS care, CAREWare has come to fill a number of these
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BRIEF COMMUNICATION
Agency Types
Compared to users of other software applications, CAREWare users
were more frequently hospital or university-based outpatient clinics
(22% vs 18%) and city and state health departments (15.5 vs 12.6%).
Fifty-one percent of CAREWare submissions of client-level data were
from community-based service organization or community health centers compared to 59% that used other applications. Finally, the majority of data submissions from outpatient ambulatory medical care
providers (479 of 821 or 58%) were generated by CAREWare.
Milberg JA, J Am Med Inform Assoc 2016;23:1190–1194. doi:10.1093/jamia/ocv212, Brief Communication
gaps in health information system functionality – reporting, information exchange and data-sharing, population-management tools, quality
management, and service integration – even though many of these
providers may also use a larger, certified EHR (in our survey, 62% reported using another application). The ability to complement, and
work with other health information systems, particularly in resourcechallenged HIV primary care settings, will be critical to CAREWare’s
success and to its ongoing utility.
Finally, a major enhancement in the next year will be a rebuilding
of the user interface so that CAREWare can run in any Internet
browser. This modernization will allow, in a way not currently feasible,
for one major component of meaningful use to be addressed, namely
giving HIV/AIDS clients secure access to their own electronic health
care record, and advancing the principal goal of the Federal health IT
agenda of “person-centered and self-managed health.”17
ACKNOWLEDGEMENTS
BRIEF COMMUNICATION
CAREWare software could not have been developed and succeeded without the
support of the HRSA- HIV/AIDS Bureau, the extensive input from users in the
United States and internationally, and without the unparalleled programming,
design, and technical support expertise of the following individuals: Becki
Bishop, Rahul Bukkarayasamudram, Roy Carubba, Craig Cifreo, Bill Devlin, Jeff
Murray, Adam Pounders, and Kevin Ricciardo - all of Jeff Murray’s
Programming Shop (jProg), Inc., New Orleans, LA.
CAREWare has been presented at the following meetings:
American Medical Informatics Association Annual Symposium, October 22–26,
2005, Washington DC.
Health Informatics In Africa Symposium (HELINA) 2004, Johannesburg, South
Africa.
FUNDING
This research received no specific grant from any funding agency in the public,
commercial, or not-for-profit sectors.
CONTRIBUTORS
Mr. Milberg conceived, wrote, and compiled the data for this manuscript.
COMPETING INTERESTS
None.
REFERENCES
1. CAREWare. http://hab.hrsa.gov/manageyourgrant/careware.html. Accessed
January 25, 2016.
2. Ryan White HIV/AIDS Treatment Modernization Act. http://hab.hrsa.gov/
abouthab/legislation.html. Accessed January 25, 2016.
3. RSR reporting background. https://careacttarget.org/category/topics/ryanwhite-services-report-rsr. Accessed January 25, 2016.
4. CAREWare user survey, Health Resources and Services Administration, HIV/
AIDS Bureau, unpublished data.
5. The Henry J. Kaiser Family Foundation, US Federal Funding for HIV/AIDS:
The President’s FY2016 Budget Request. See http://kff.org/global-healthpolicy/fact-sheet/u-s-federal-funding-for-hivaids-the-presidents-fy-2015budget-request/ for outline of domestic funding for HIV care. Accessed
January 25, 2016.
6. HIV Diagnosis, Care, and Treatment Among Persons Living with HIV —
United States, 2011. MMWR. 2014;63(47):1113-1117. See HRSA/HAB official State Profile data. http://hab.hrsa.gov/stateprofiles/. Accessed January
25, 2016.
7. HRSA HIV/AIDS Bureau, CAREWare Quick Start Guide. CAREWare is designed as a three tier-architecture, with a client tier, business tier, and database tier (SQL Server). http://hab.hrsa.gov/manageyourgrant/careware/
quickstart1.pdf .Accessed January 25, 2016.
8. HAB performance measures outlined here. https://careacttarget.org/library/
hab-hiv-performance-measures-core-clinical-0. Accessed January 25,
2016.
9. Centers for Medicare and Medicaid Services. Electronic Health Records
(EHR) Incentive Programs. http://www.cms.gov/ehrincentiveprograms/.
10. See the Federal National HIV/AIDS Strategy document here. http://www.
whitehouse.gov/administration/eop/onap/nhas. Accessed January 25,
2016.
11. The Provider Data Import (PDI) user guide and file specifications are available on the CAREWare website. http://hab.hrsa.gov/manageyourgrant/careware.html. Accessed January 25, 2016.
12. Office of the Assistance Secretary of Planning and Evaluation, US Dept. of
Health and Human Services. Analysis of Integrated HIV Housing and Care
Services. See http://aspe.hhs.gov/health/reports/2014/hivhousing//rpt_hivhousing.cfm. Accessed January 25, 2016.
13. Messer LC, Parnel H, Juffaker R, et al. The development of a health information exchange to enhance care and improve patient outcomes among
HIVþ individuals in rural North Carolina. Int J of Med Inform.
2012;81:e46–e55.
14. Shade SB, Steward WT, Koester KA, et al. Health information technology interventions enhance care completion, engagement in HIV care and treatment, and viral suppression among HIV-infected patients in publicly funded
settings. J Am Med Inform Assoc. 2015;22:e104–e111.
15. Saberi P, Catz S, Leyden W, et al. Antiretroviral therapy adherence and use
of an electronic shared medical record among people living with HIV. AIDS
Behav. 2015;19:S177–S185.
16. Krist AH, Beasley JW, Crosson JC, et al. Electronic health record functionality needed to better support primary care. J Am Med Inform Assoc.
2014;21:764–771.
17. See “Guiding the Federal Health IT Agenda”. www.healthit.gov. Accessed
January 25, 2016.
AUTHOR AFFILIATIONS
....................................................................................................................................................
US Department of Health and Human Services, Health Resources and Services
Administration, HIV/AIDS Bureau, Rockville, MD, USA
1194