S U P P L E M E N T A R T I C L E
Health Care System and Policy Factors
Influencing Engagement in HIV Medical Care:
Piecing Together the Fragments of a Fractured
Health Care Delivery System
Michael J. Mugavero,1Wynne E. Norton,2and Michael S. Saag1
1Department of Medicine, Division of Infectious Diseases, School of Medicine and2Department of Health Behavior, School of Public Health, University
of Alabama at Birmingham, Birmingham, Alabama
Grounded in a socio-ecological framework, we describe salient health care system and policy factors that
influence engagement in human immunodeficiency virus (HIV) clinical care. The discussion emphasizes
successful programs and models of service delivery and highlights the limitations of current, fragmented
health care system components in supporting effective, efficient, and sustained patient engagement across
a continuum of care. A fundamental need exists for improved synergies between funding and service agencies
that provide HIV testing, prevention, treatment, and supportive services. We propose a feedback loop whereby
actionable, patient-level surveillance of HIV testing and engagement in care activities inform educational
outreach and resource allocation to support integrated ‘‘testing and linkage to care plus’’ service delivery.
Ongoing surveillance of programmatic performance in achieving defined benchmarks for linkage of patients
who have newly diagnosed HIV infection and retention of those patients in care is imperative to iteratively
inform further educational efforts, resource allocation, and refinement of service delivery.
In recent years, the concept of adherence for patients
infectedwiththe human immunodeficiencyvirus (HIV)
has expanded beyond antiretroviral therapy (ART) to
include adherence to clinical care , which is com-
monly referred to as engagement in care. The Health
Resources and Services Administration (HRSA) has
operationalized a continuum of engagement [2, 3],
ranging from those who are not aware of their HIV
status through individuals who are fully engaged in HIV
care (Figure 1). Embedded within this continuum of
care are the processes of engagement: linkage, retention,
and re-engagement in care for those patients who are
lost to follow-up (Figure 2).
In addition to having well-documented health im-
plications for individual patients [5–7], engagement in
HIV care plays a vital role in preventing new HIV in-
fections, which is a critical public health consideration.
A ‘‘test and treat’’ (TnT) approach to preventing HIV
infections has garnered considerable interest and en-
thusiasm in a relatively short period of time . Nota-
bly, the success of TnT is contingent upon linkage of
patients with newly diagnosed infection (the ‘‘test’’
portion of TnT) to clinical care, such that access to ART
(the ‘‘treat’’ portion of TnT) is achieved .
The vital role of retention in care beyond initial
linkage to ensure sustained ART cannot be overstated.
Numerous studies have documented high rates of at-
trition within the first year after enrollment in HIV care,
and poor retention has been linked with inconsistent
ART receipt and adherence [4, 5,7,10]. Inan attemptto
moreexplicitlydefine the process,TnThas recentlybeen
The content is solely the responsibility of the authors and does not necessarily
represent the official views of the National Institutes of Health.
Correspondence: Michael J. Mugavero, MD, CCB 142, 908 20thSt South,
Birmingham, AL 35294-2050 (firstname.lastname@example.org).
Clinical Infectious Diseases
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d CID 2011:52 (Suppl 2)
d Mugavero et al.
referred to as ‘‘Testing, Linkage to Care plus’’ (TLC1), where
the ‘‘plus’’ equals ART . To date, however, there are rela-
tively few evidence-based behavioral- or systems-level inter-
ventions designed to address each of the essential steps of
engagement in care. Moreover, identified efficacious programs
haveyet to bewidelydisseminated,implemented,andintegrated
as standard of care, thereby limiting their potential impact on
In the current article, our objectives in discussing engagement
in HIV care are 3-fold: (1) to review health care system– and
policy-level factors that influence engagement in HIV care after
HIV testing and diagnosis, (2) to describe successful programs
and health care systems, and (3) to provide initial system- and
policy-level recommendations to improve the current state-of-
the-science and standard of practice. A socio-ecological per-
spective(Figure 3)provides aframeworkfor conceptualizing the
complex interplay of individual-, relationship-, community-,
health care system–, and policy-level factors that influence the
processes of engagement in HIV care .
HEALTH CARE SYSTEM
Real-time surveillance of all components of engagement in HIV
care is critical to maximize the use of limited resources, guide
the deployment of evidence-based interventions, and monitor
and respond appropriately to emerging outbreaks, to opti-
mize individual- and population-level HIV health outcomes.
Notably, the ability to track and respond effectively to true HIV
infection incidence in real time is an important goal and, al-
though extraordinarily difficult to implement, remains a top
Unfortunately, current health care systems have limited
patient-level surveillance data regarding engagement in HIV
care and very little capability to measure actual incident cases of
HIV infection . Estimates of the number of patients in HIV
medical care are often based on dated surveillance data or
extrapolated by merging utilization and claims data collected
from public and private sources to provide relatively crude
population estimates [14, 15]. The Centers for Disease Control
and Prevention (CDC) Medical Monitoring Project has
developed a representative sample to allow for surveillance of
clinical outcomes and behaviors among a nationally represen-
tative sample of HIV-infected patients that will be used to
inform prevention and service delivery at a population level
. The shift to patient-level reporting for individuals who
receive HIV supportive and/or treatment services funded by the
Ryan White HIV/AIDS Program may also allow for improved
surveillance for patients supported by this program, who are
estimated to account for roughly one-half of HIV-infected
individuals in the United States. However, more actionable and
innovate systems that capture real-time surveillance data are
Reprinted from Cheever  with permission from the University of Chicago Press.
Health Resources and Services Administration, Human Immunodeficiency Virus (HIV)/AIDS Bureau, continuum of engagement in HIV care.
optimal clinical outcomes. The processes of engagement in HIV medical care—linkage, retention, and re-engagement—are essential intermediaries for
achieving maximal success of a ''test and treat'' approach to secondary HIV prevention. ART, antiretroviral therapy. Adapted from Ulett et al  with
permission from Mary Ann Liebert.
Blueprint for human immunodeficiency virus (HIV) treatment success outlining the requisite steps from HIV testing and diagnosis to achieve
HIV Engagement: System and Policy Factors
d CID 2011:52 (Suppl 2)
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