Abstract
Linkage services are an increasingly important component of the continuum of care for people living with HIV, particularly for individuals diagnosed in nonprimary care settings who are less likely than those identified in primary care settings to have a usual source of care. This study examines successful models used by hospital emergency departments, health department outpatient clinics, and other nonprimary care providers for testing, linking, and engaging newly diagnosed HIV-positive racial and ethnic minorities into medical care. Based on studies of five mature linkage-to-care (LTC) programs implemented in geographically and institutionally diverse settings, we identify five key characteristics that make them viable. Effective linkage programs are low cost, intensive, time limited, unique, and flexible. We also identify four core components of successful LTC protocols: directly employed linkage workers, active referral to medical care, person-centered linkage case management, and cultural and linguistic concordance. Finally, we develop a set of operational strategies to help providers address barriers at all levels of the health care system to help promote the effective linkage of newly diagnosed patients to care. We organize the strategies around four key areas: adherence to LTC protocols, selection of linkage workers, execution of linkage programs, and sustainability of linkage programs. The findings presented in this study provide a practical and operational guide for developing and implementing policies and procedures for linking newly diagnosed individuals who test HIV positive in nonprimary care settings into ongoing care for HIV infection.
Introduction
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Linkage services are an important component of the continuum of care and treatment for people living with HIV and AIDS, starting with increased awareness of one's HIV status and enhanced understanding of HIV disease and continuing through referral to care, receipt of intermittent care, active engagement in care, and improved self-management of the disease, with the ultimate goal of suppression of HIV viral load and improved health outcomes. 1,2 Without effective linkage services specifically designed to actively engage newly diagnosed HIV-positive individuals into ongoing care, it is likely that efforts to implement routine HIV testing in nonprimary care settings will have little effect on patients' health outcomes. While linkage services play an important role in engaging and retaining newly identified HIV-positive individuals in care, few studies have documented the most effective way of designing and implementing these types of service programs. Site visits, administrative reports, and client-level data generated from the Antiretroviral Treatment Access Studies (ARTAS) have begun to identify several best practices for promoting linkages to care. 3,4 Best practices include selecting appropriate organizations to conduct linkage services, establishing and strengthening partnerships for linkage services; differentiating linkage case management from long-term case management; marketing linkage services; obtaining support and sustaining referrals to linkage programs; creating mobile linkage services; graduated disengagement of linkage clients to transition them from linkage case management to long-term case management; providing ongoing support to linkage personnel; and financial sustainability of linkage services.
One recent study of a clinician-initiated rapid HIV testing and linkage program in a large urban hospital's ED found that the addition of targeted testing to diagnostic testing contributed to an increase in the number of tests per month, with over 90% of all newly diagnosed and out-of-care HIV-infected patients successfully connected to care. 5 The Young Men of Color Who Have Sex with Men intervention funded under the Health Resources and Services Administration's Special Project of National Significance program also helped document the effectiveness of intensive client-focused linkage and long-term case management in identifying and retaining HIV-positive racial and ethnic minorities in care. 6,7
Other studies suggest that the health care system misses opportunities for early detection and treatment of HIV and prevention of secondary infections, particularly among racial and ethnic minorities. 8,9 To address these concerns about lack of awareness and missed opportunities for HIV diagnosis, in 2003 the CDC introduced an initiative to make HIV testing a routine part of medical care provided on the same voluntary basis as other diagnostic and screening tests, particularly in settings where HIV-positive individuals are most likely to be treated, including hospital EDs, public health clinics, and community health centers. 10 In September 2006, the CDC released updated testing recommendations, which included routine HIV screening in health care settings for all adults between the ages of 13 and 64, as well as repeated annual screening for high-risk individuals. 11 The CDC recommended that screenings be based on a voluntary “opt-out” process, in which patients are notified that the test will be performed and consent is inferred unless the patient declines. The CDC also recommended that counseling and risk assessment before HIV testing be discontinued and that posttest counseling and rapid linkages to care for HIV-positive individuals be emphasized instead. 11
In 2007, the CDC funded 23 state and city health departments for a 3-year program, called the Expanded and Integrated HIV Testing for Populations Disproportionately Affected by HIV, also known as the Expanded Testing Initiative (ETI). 12 The goals of ETI were to conduct 1.5 million HIV tests and identify 20,000 new HIV infections annually, targeting disproportionately affected populations. 13 In 2008, the CDC funded a second 3-year grant cycle to expand routine HIV testing in jurisdictions disproportionately affected by HIV. More than three-quarters of the funded jurisdictions devoted health department staff time to providing technical assistance to grantees on issues related to linkages to care. 14 In July 2011, the CDC released a new 5-year grant opportunity for health departments—called Comprehensive HIV Prevention Programs for Health Departments—that collapses expanded testing and linkage-to-care (LTC) requirements into one program. Increasing access to care through providing linkages to primary care is one of six goals of the new program. The program includes numerical targets and performance standards for linkages to care. Specifically, the CDC expects each funded jurisdiction to link at least 80% of persons who receive an HIV-positive test result to medical care and to ensure they attend their first appointment.
The 2009 reauthorization of the Ryan White HIV/AIDS Program also placed greater emphasis on identifying people who are HIV positive and helping them to access care. The statute requires Part A and Part B grantees to develop plans to identify undiagnosed individuals living with HIV/AIDS, make them aware of their serostatus, and provide access to medical treatment for HIV. Additionally, in July 2010, the White House Office of National AIDS Policy released its National HIV/AIDS Strategy and Federal Implementation Plan. 15,16 The national strategy recommends targeting HIV resources to include support for linkage coordinators in a range of settings where at-risk populations receive health and social services. This study examines successful models used by hospital EDs and health department clinics for testing and linking newly diagnosed HIV-positive individuals into HIV primary care and presents a set of practical guidelines for implementing LTC protocols in nonprimary care settings.
Methods
The LTC protocols presented in this article are based on five site visits to health departments and hospital EDs, as well as to medical clinics that serve HIV-positive patients identified through health department and hospital ED-based HIV testing initiatives. Based on a comprehensive review of the published and “gray” literature and discussions with national experts and program stakeholders, we selected five sites with mature and effective LTC protocols. We also selected sites that serve a large proportion of racial and ethnic minorities with HIV and represent diverse geographic and institutional settings, focusing specifically on linkage partnerships between primary care clinics and hospital EDs and health department STD clinics.
During the site visits, we collected detailed data on the design and implementation of successful LTC protocols to engage HIV-positive patients with care, challenges that HIV testing sites face in identifying and linking these patients to medical care, and strategies for implementing effective LTC protocols. We also assessed variations in LTC practices based on organizational setting and/or minority population, and the extent to which these protocols can be replicated in other clinical settings and for other minority populations. We developed semistructured discussion guides to systematically interview individuals at each site, and synthesized the notes into case studies with which we conducted content analysis to identify critical elements of and lessons learned from each initiative.
In total, we studied seven linkage programs in five jurisdictions. Several sites include multiple LTC programs, while others have one. All of the programs are located in major metropolitan areas, and two sites also serve clients living in surrounding rural areas. Three sites are located in the South, one in the Northeast, and one in the Midwest. Three of the linkage programs are part of hospital-based, integrated health care systems. Three programs are administered by local health departments and serve patients at publicly funded STD clinics and in mobile vans. One program is a community-based partnership between state and local health departments, hospital EDs, publicly funded STD clinics, and a comprehensive primary care clinic. All programs receive federal funding from the CDC and the Health Resources and Services Administration (HRSA), and provide routine HIV testing and linkage services to those who test HIV positive. Although the title and description of the position varies across programs, they all employ linkage workers to provide posttest counseling, education, referral, navigation, case management, and linkage services to newly diagnosed individuals who test HIV-positive in nonprimary care settings.
Challenges to Linking Newly Diagnosed Individuals to Care
Substantial challenges were found to exist in implementing the CDC's recommendations for routine HIV testing in nonprimary care settings, as well as in designing and implementing LTC programs for newly diagnosed HIV-positive individuals. Barriers exist at the (1) system or community, (2) organizational or provider, (3) clinician or staff, and (4) individual or client levels.
System or community-level barriers result from legal, government, insurance, population, or health care delivery system factors that impede the implementation of the the CDC recommendations and LTC programs. For example, lack of community awareness about HIV risk and the need for HIV testing acts as a barrier to efforts to increase the rate of individuals who are aware of their HIV serostatus and linked into care. In addition, HIV testing and treatment services traditionally have been funded and administered separately, creating a barrier to establishing effective linkage programs. These separate financing and administrative silos made efforts to coordinate and expand HIV testing and linkage services challenging. Furthermore, restrictive state laws regarding HIV testing, health records, and laboratory reporting hamper efforts to conduct opt-out testing and to transition HIV-positive individuals from testing to treatment. Restrictive federal and state laboratory licensure requirements can similarly impede HIV rapid testing and LTC protocols.
Organizational or provider-level barriers result from the resistance of organizations to accept and adopt change, inadequate interorganizational and intraorganizational collaborative experience between HIV testing and treatment programs, insufficient funds and other resources, and structural impediments such as physical space. All of the sites participating in the study reported that existing policies and protocols either deterred implementation of expanded HIV testing and LTC programs or did not offer a sufficient framework for undertaking these activities. Furthermore, sites reported challenges to integrating LTC services within existing HIV prevention, testing, and treatment programs. Integration of programs is challenging due, in many cases, to a lack of experience in coordinating, collaborating, and integrating intra-agency and interagency programs. For example, implementation of HIV testing for most participating entities, such as hospital EDs, raised concern about how to facilitate access to HIV treatment after identifying HIV-positive patients. For the participating sites in decentralized health care systems, multiple agencies and departments were involved, expanding the complexity of integration significantly.
Established patient flow patterns can also present barriers to HIV routine testing and linkages to care. For example, at a public safety net hospital in Kansas City, medical staff were unable to screen all clients who requested an HIV test. Some “fast-track” clients come to the ED for medication refills or work excuses and, while there, request an HIV test. However, these clients are not in the ED long enough for staff to provide them with the test. At an STD clinic in Baltimore, a new patient's first visit includes meeting with a nurse for intake and blood draw, followed by a meeting with a case manager or social worker who provides intake and social services. Patients do not meet with a medical provider until the end of that process. As a result, some clients receive social services and resources and then leave before seeing a medical provider.
In addition, confirmatory serologic HIV testing following a preliminary positive rapid HIV test commonly requires a 2-week wait for the result, interrupting the linkage process because some clients do not return for their results. At a public hospital in Houston, hospital linkage staff schedule follow-up or intake appointments while patients await confirmatory test results. However, LTC workers must confirm that an individual is HIV positive before they can link the patient with medical and support services funded under the Ryan White HIV/AIDS Program. As a result, linkage workers are generally unable to initiate their services until confirmation of the client's HIV seropositivity and other eligibility requirements. Linkage staff explained that clients often have to wait longer than one month for their initial medical visits and, due to these delays, missed appointments for initial medical visits are common.
Lack of funding, staffing, training, and physical capacity also commonly affect the implementation of HIV routine testing and LTC activities. Finally, a lack of integrated client-level electronic health systems that track clients from testing to linkage and treatment services hampers LTC initiatives by reducing the flow of information between providers.
Clinician or staff-level barriers include lack of leadership, low priorities assigned to HIV testing and linkages to care, lack of staff buy-in, and inadequate training. For example, lack of commitment and priority setting among senior leadership impedes initial establishment of LTC programs. Many informants stated that gaining leaders' agreement to establish expanded HIV testing and linkage services as a high organizational priority can be a major challenge, particularly in environments in which there are numerous competing priorities. Similarly, most sites participating in the study reported that obtaining staff input and buy-in regarding the integration of HIV testing and linkage services into ongoing programs was a major challenge, particularly during the early planning and implementation stages. In addition, integrating HIV testing with other clinical responsibilities is a barrier to obtaining staff support and participation. Staff may be reluctant to change existing patient flow protocols, and may be resistant to additional procedures that would make it difficult for them to carry out their normal clinical duties.
Individual or client-level barriers include sociodemographic and economic characteristics; low health and HIV literacy; lack of access to health care; and concern about discrimination, stigma, and disclosure of HIV serostatus. The staff of programs studied report that many newly diagnosed patients lack basic knowledge about HIV transmission, risk reduction, disease, and treatment, and so may be unaware of their need for testing. According to many informants, clients' concerns regarding HIV discrimination, disclosure, stigma, and homophobia also deter HIV testing and treatment. Many informants reported that racial and ethnic cultural barriers, including linguistic barriers among non-English speaking clients, significantly affect implementation of LTC programs because linkage staff cannot effectively communicate with some of their clients. Additionally, comorbid conditions, including mental illness and addiction, seriously impair the ability to link some newly diagnosed clients to care. Finally, individuals who test HIV positive in nonprimary care settings often lack a usual source of care, which further impedes access to ongoing treatment services.
Strategies for Implementing Linkage-to-Care Protocols
One of the key findings of this study is that LTC programs vary widely based on the needs, resources, partnerships, organizational structures, leadership, target populations, and policies of each setting. Although LTC programs have unique characteristics, we identified three common domains that facilitate replication of LTC protocols (Table 1). First, we identified five key characteristics of most LTC programs. We then identified four core components of most (although not all) of the LTC programs we visited. Finally, we identified a set of strategies that organizations and communities developed to overcome barriers to engagement in care and to promote the successful implementation of their LTC programs.
Key characteristics of linkage programs
Despite variation in the design and implementation of the LTC programs, they all share five key characteristics that make them viable: they are low cost, intensive, short term, unique, and flexible. We describe each of these key program characteristics below.
Low cost
Paraprofessional staff members under the supervision of a licensed master social worker (LMSW) deliver most LTC services. Linkage workers require less formal training than medical case managers. One program reported that linkage workers earn about one-half what they pay for a medical case manager. More important to the position is prior experience working with HIV-positive people and experience working in high-intensity environments, such as hospital EDs. In addition, several organizations reported requiring linkage workers to complete a training program in motivational interviewing and protocol-based counseling techniques to learn how to communicate with newly diagnosed clients, help them cope with their fears, understand their barriers to accessing care, and engage them in care. As a result, LTC programs can be implemented and sustained with a relatively minimal investment of resources.
Intensive
LTC programs require a significant investment of time helping newly diagnosed patients understand HIV and the importance of early entry in and adherence to care. Most newly diagnosed patients who test HIV positive in nonprimary care settings have a poor understanding of HIV disease, face significant competing priorities, and have few resources for overcoming their barriers to care. Several programs adopted an intensive case management protocol in which the linkage worker contacts the client at least once a week to ensure he or she understands the importance of adhering to medical appointments and to assist the client in addressing new developments that might hinder his or her ability to remain engaged in care. Linkage workers are also typically available to accompany the client to the intake and initial medical appointment and maintain contact until the patient completes at least his or her first medical visit. Because of the intensity of the intervention, linkage workers generally manage fewer active cases than medical case managers.
Time limited
LTC services are provided for only a short time. They start as soon as an individual receives a preliminary HIV-positive diagnosis, and continue only until the client is actively engaged in HIV primary care. The termination point is usually defined as completion of the first medical appointment, but may continue through the first three medical appointments to ensure unexpected barriers are addressed and the patient is actively engaged in ongoing care. Under the CDC's ARTAS- based protocol, linkage case management services are available for up to 90 days and terminate with an active handoff to a medical case manager. 17 Other programs also emphasized the goal of transferring clients into a long-term medical case management.
Unique
The responsibilities of linkage workers are different from those of long-term medical case managers. The duties of linkage workers commonly include educating newly diagnosed patients about health literacy, HIV disease, and treatment. Motivational interviewing techniques are used to help clients recognize their core strengths, identify barriers to care, set their own goals for HIV treatment, and help patients to navigate a complex health care system and attend their appointments. Linkage workers also refer patients to childcare, transportation, translation services, and other social services to help them deal with competing life challenges that impede access to and retention in care. Because of the greater challenges that newly diagnosed patients face in accessing and engaging care, linkage workers also develop a close bond with their clients and maintain smaller caseloads than long-term medical case managers.
Flexible
LTC programs must be adapted to fit the needs and resources of the community they are intended to serve. Although there are core elements that should be included in all LTC programs, the way the programs are designed and implemented vary depending on a wide range of factors, such as whether state laws permit opt-out testing, programs are implemented within an integrated provider network or an open community-based setting, clients are referred from hospital EDs or outpatient clinics, sites use rapid or conventional testing, lab services and HIV treatment services are available on site, or special language or other cultural assistance services are needed.
Core components of linkage programs
We also identified four core components of LTC programs for newly diagnosed individuals who test HIV positive in nonprimary care settings. While not all of the sites adopted each of these core elements, they represent the critical components of a program designed to identify people without a usual source of care who test HIV positive in hospital EDs, city or county public health department clinics, walk-in HIV testing centers, or community-based settings. These elements are also important to link newly diagnosed patients with an HIV provider and engage them in ongoing HIV care. The four core components are (1) directly employed linkage workers, (2) active referral to medical care, (3) client-centered linkage case management, and (4) cultural and linguistic concordance between linkage staff and their clients. We briefly discuss each core component next.
Directly employed linkage workers
Most of the LTC programs emphasized the employment of personnel to provide linkage services to newly diagnosed patients who test HIV positive in nonprimary care settings. Linkage workers' services differ from those provided by medical and social case managers; to be effective, dedicated staff specifically trained in LTC protocols should administer linkage services. Three of the five sites provided internal trainings to linkage workers to identify and address individual barriers to care, including denial, fear of disclosure, loss of support, depression, substance abuse, and competing work or family responsibilities. Two sites partnered with their local AIDS education and training centers (AETCs) to receive additional technical assistance and training services. One of the local AETC organizations helped grantees navigate regulatory barriers to testing and linkage services. At another site, the state required that counselors providing HIV testing and counseling services receive training before administering linkage services.
Linkage workers need training in motivational interviewing and protocol-based counseling techniques, an understanding of HIV disease and treatment, knowledge of the local health care delivery system and other community resources, and an ability to provide intensive case management and follow-up for a limited period. Most importantly, linkage staff must understand the fears and competing priorities of newly diagnosed clients, and help them recognize their needs and develop the skills to address their obstacles to accessing care. Linkage programs also benefit from having dedicated staff embedded within testing and referral sites or, if that is not feasible, available to meet patients at testing sites immediately after preliminary diagnosis. Basing linkage workers in hospital EDs in particular helps to minimize burden to and maximize buy-in from ED clinicians; promote continued implementation of routine testing policies; and ensure that newly diagnosed patients receive the counseling, referral, and navigation services they need to access care.
Active referral to medical care
All of the LTC programs were based on active referrals to medical care. Informants emphasized that entry into care can be a difficult and overwhelming process for patients without a usual provider who have just learned they are HIV positive. Linking them to care is a time-intensive, deliberative process and requires communicating with newly diagnosed patients on a daily or weekly basis until they achieve a predetermined treatment goal or milestone. The active referral process includes helping newly diagnosed patients (1) understand the need for and know how to connect with a medical provider for follow-up care in a timely manner; (2) schedule their intake, screening, and initial medical appointments; (3) develop strategies to ensure they have the support and assistance they need to attend their appointments; and (4) remain engaged in care by, if necessary, accompanying them to the clinic for their initial appointments and staying with them on their first day as they complete the intake and screening processes. Active referral also requires linkage coordinators to track patient appointments and follow up with those who fail to attend their appointments, helping them identify and address barriers to care as they arise. The active referral process for linkage workers typically ends when a client completes the first medical appointment or enrolls in medical case management.
Person-centered linkage case management
Another core component of linkage programs is person-centered linkage case management. Although each program defined the activity differently, the central aim of the person-centered linkage case management component is to provide a single point of contact who can work with the newly diagnosed individual to help identify his or her medical and social needs and assess the services that would help meet those needs. Person-centered linkage case management starts from an “asset” perspective, which assumes that clients possess inherent strengths and, with encouragement and support from linkage staff, can learn how to use those strengths to take responsibility for managing HIV. The assessment and activation of client strengths and assets in HIV settings build on strength-based social work theory. 18 –20 Person-centered linkage case management can entail a broad range of services, including post-test counseling, patient education, patient location, needs assessment, coordination of resources, patient navigation, assistance with support services, access to eligibility and screening, medical referrals and escorts, appointment tracking, and follow-up contact. However, the type and scope of linkage services offered will depend on the needs and strengths of each client. Individualized case management that can help newly diagnosed patients understand HIV, assess their competing medical and social needs, develop a person-centered plan for meeting those needs, and identify concrete steps for making use of available resources and supports to facilitate engagement in care is an important component of linkage programs.
Cultural and linguistic concordance
Finally, program administrators and frontline staff emphasized that, to improve the impact of LTC efforts, linkage workers should be culturally and linguistically representative of the populations they serve. Program staff interviewed for this study reported that members of minority and immigrant populations are more likely than whites to receive HIV screening and learn that they are HIV positive in nonprimary care settings. They also reported that testing racial and ethnic minority group members is also more likely to occur at an advanced stage of illness, which leads them to suffer from more complex symptoms and comorbidities at the time of diagnosis. Linkage personnel explained that minority clients face a broad range of issues that make it difficult for them to engage in HIV care, including their attitudes toward being HIV positive, lack of understanding about HIV and HIV treatment, fear of withdrawal of family and social supports, competing personal and employment responsibilities, substance abuse and/or mental health problems, other medical health issues, cultural and language issues, immigration issues, lack of stable housing, lack of health insurance, and lack of accessible transportation. Most informants agreed that employing culturally and linguistically competent staff helps to mitigate the cultural barriers and issues of stigma that can challenge successful LTC protocols.
Factors promoting successful implementation of linkage programs
The organizations and providers described a wide range of strategies used to promote the successful implementation of their LTC programs. The set of strategies or factors identified by informants as critical for effective implementation of LTC programs was similar across the different settings. We organize these common strategies into four key areas: (1) adherence to LTC models or protocols, (2) selection of linkage workers, (3) execution of linkage programs, and (4) sustainability of linkage programs. We present the strategies associated with each of these implementation domains next.
Adherence to linkage protocols
Although not all of the programs had formalized linkage protocols, developing and adhering to a specific set of procedures and responsibilities for linking newly diagnosed patients to care are critical for program success. The specific procedures for linking newly diagnosed patients to care will vary depending on the testing site; however, all of the LTC protocols shared five general features. First, linkage workers are usually available 24 h a day, 7 days a week to accept referrals from testing staff and to meet with patients in the testing setting as soon after initial diagnosis as possible. Second, linkage workers have an initial meeting with the newly diagnosed patient, providing post-test counseling, educating the patient about HIV disease and treatment, assessing the needs of the client, and providing referrals to social support and medical services. Third, linkage staff schedule the intake, screening, and medical appointments on behalf of clients. This can occur during the initial meeting with the patient or during a follow-up visit, depending on the location of the testing site and the needs of the client. Fourth, linkage workers provide ongoing follow-up contact with clients. This includes follow-up contact with clients who are already in care to assess their experiences, answer new questions they might have, and help address barriers to remaining in care. For those clients who are not in care, it involves reevaluating their readiness to enter care. During this transitional period (between initial diagnosis and engagement in care), linkage workers play a critical role by providing a single point of contact for their clients, someone who is available to meet with them at any time to discuss issues related to engagement in HIV care. Fifth, linkage workers actively transition the newly diagnosed clients to medical case managers.
Selection of linkage coordinators
One of the most critical factors for implementing successful LTC programs is the selection of the linkage workers. Many program administrators explained that the personality, cultural background, and interpersonal skills of linkage workers were more important determinants of linkage outcomes than their educational backgrounds. Linkage workers must demonstrate a strong client focus and feel comfortable working with newly diagnosed people in the community. Linkage workers need to (1) listen without judgment to and understand the fears and concerns of newly diagnosed clients, (2) communicate effectively with newly diagnosed individuals and help them understand HIV disease and the importance of early entry into care, (3) be patient and allow clients to make their own decisions about when and how to engage in care, (4) be persistent and available to assist clients in accessing health care services when they are ready, (5) help clients identify the strategies and resources needed to support their treatment goals, and (6) be assertive and self-motivated and work autonomously. In addition to a demonstrated client focus, program administrators typically look for candidates who have prior experience working with HIV-positive clients and, for those based in a hospital setting, prior experience working in the fast-paced and high-intensity environment of a hospital ED is required.
Most programs studied require their linkage staff to complete a training program in motivational interviewing and protocol-based counseling techniques before they can work independently to develop the technical skills needed to provide effective linkage services. One clinic in a large integrated delivery system developed a protocol-based training program and required service linkage workers to be certified by the city before they are allowed to give HIV test results. The clinic also holds a monthly all-staff training meeting, during which time the clinic is closed. In another urban setting, the local AETC organization is under contract to provide technical assistance, training, and training materials to city-funded HIV testing and treatment sites. The AETC provides HIV knowledge and clinical skills building and two weeks of training for staff in community-based settings.
Training programs usually include role-playing and other techniques for learning how to speak with newly diagnosed patients who test HIV positive in nonprimary care settings and engage them in ongoing HIV care. Programs may require their linkage staff to complete annual training updates to maintain their counseling or case management certification. In addition, several programs pair their linkage workers with master's degree-level case managers in HIV primary care settings. The medical case manager provides ongoing supervision and mentoring to the linkage worker. In exchange, the linkage worker can use these supervised hours to help medical case managers provide retention support to patients already in care. In some settings, linkage workers also conduct rapid testing, and are trained in drawing blood as well.
Execution of linkage programs
Unlike more narrowly defined health interventions that fall within a single scope of practice or provider setting, LTC programs span multiple organizations, and multiple units within organizations, at different levels of the health care delivery system. The effectiveness of LTC programs depends on how well they are executed at each level and within each organization. Successful implementation of linkage programs depends on the coordination and integration of services at three levels: (1) local public health departments, (2) routine HIV testing and referral organizations, and (3) medical care provider organizations.
First, successful implementation of linkage programs depends on the coordination of linkage services with local health departments. Linkage programs are intended to transition newly diagnosed individuals from HIV testing sites (which have traditionally been supported by CDC prevention funds) to HIV care sites (which are often supported by HRSA treatment funds). One site administers HIV prevention and treatment programs through a single government office. Central administration of CDC and Ryan White Program funding enables that city to integrate its HIV testing and linkage programs.
Second, successful implementation of linkage programs requires the coordination of services with HIV testing organizations, such as hospital EDs and public health clinics. To obtain staff buy-in and ensure their ongoing cooperation with LTC programs, linkage protocols must be designed to minimize the disruption to the normal workflow of the testing site and the involvement of existing clinical and administrative staff. Depending on the site, this could mean co-locating linkage workers within hospital EDs, making linkage services available 24 h a day, seven days a week, posting signage in the ED reminding staff about the referral protocol and how to contact linkage workers, providing scripts for clinicians to use when delivering preliminary test results, permitting nurses to fill out lab orders, and using rapid testing technology and employing dedicated testers. Other strategies for coordinating linkage services with referral organizations include soliciting input from clinical and administrative staff early in the planning process, providing initial and ongoing education about the importance of HIV testing and linkage services, conducting initial and ongoing staff training on the routine testing and linkage protocol, responding to ongoing feedback, and promoting program effectiveness by reporting outcomes data on the number of patients diagnosed and successfully linked to care. Having support from senior management and internal champions within referral sites, using direct appeals by medical directors from HIV care clinics, starting incrementally and building upon existing programs, and visiting other successful linkage programs are also important determinants of success.
Third, successful implementation of linkage programs requires coordinating linkage services with HIV primary care provider organizations. The linkage programs developed a wide range of strategies to facilitate rapid entry into care for newly diagnosed patients. Among them are registering clients in Ryan White Program or other electronic health record systems, scheduling intake and screening appointments as soon as clients are diagnosed, employing linkage workers to welcome and orient clients when they arrive for initial appointments, accompanying clients to intake and screening appointments, introducing clients to peer counselors who understand the intake and screening process firsthand, consolidating intake and screening appointments so clients can complete them on the same day, expediting medical appointments so clients can be examined by a physician within the first few days after diagnosis, providing transportation assistance and other supports to help clients reach the clinic, hiring culturally concordant linkage workers who understand some of the barriers to care that new clients might experience, providing in-person or telephonic translation services, maintaining contact with newly diagnosed clients who might not be ready to enter care, and conducting multimode follow-up to help clients address new issues as they arise.
Sustainability of linkage programs
The final determinant of successful execution of LTC programs has to do with the ability to sustain the intervention financially and organizationally over time, particularly as the CDC's routine testing policy becomes more widely adopted by nonprimary care providers. As mentioned earlier, programs used a variety of federal funding sources and some state funding sources, and most programs cover the cost of linkage workers through Ryan White Program funds. However, sustainability is not only a function of financing; it also depends on the ongoing commitment and participation of program stakeholders, including, most importantly, frontline HIV testing staff. Maintaining a close relationship with testing and referral sites and continually refining the linkage protocol in response to changes in the health care environment were critical for sustaining the program. To sustain the commitment of all stakeholders, several programs established interorganizational work groups or learning communities to solicit feedback, identify and address problems, and develop longer-term strategic plans. They also emphasized the need to conduct ongoing training of clinical and administrative staff at testing and referral facilities, and to promote the importance of routine testing and linkage services by collecting client-level data and sharing information on program effectiveness.
Policy Implications
Our study concludes as sweeping changes are being made in the organization and delivery of HIV prevention, testing, and treatment services in the United States. The National HIV/AIDS Strategy and its Federal Implementation Plan offer a strategic vision for addressing the domestic HIV epidemic. The National Strategy and Implementation Plan highlight the critical importance of establishing integrated HIV counseling, testing, and medical care programs to ensure the rapid initiation of HIV treatment. Many of the actions identified in the federal implementation plan are consistent with the best practices used by the sites visited in this study, and some of the strategies offered in the Implementation Plan have already been adopted by the communities we studied. Provider organizations have begun to address many of the barriers to care faced by newly diagnosed patients who test HIV positive in nonprimary care settings through creative collaborative efforts and adoption of protocols and practices that could serve as road maps to success for other providers.
The White House Office of AIDS Policy has tasked its federal partners with implementing the national HIV/AIDS strategy within the context of national health care reform and a subsequent reengineering of the public health system. This shifting landscape offers tremendous opportunities to undertake innovative strategies to identify HIV-positive individuals who are unaware of their serostatus or who have dropped out of care and link them to HIV health and support services. Many of the barriers impeding access to health care services for the thousands of uninsured individuals living with HIV/AIDS, as well as the challenges that providers face offering linkage services to newly diagnosed patients, could be diminished or eliminated with implementation of the 2010 Patient Protection and Affordable Care Act. However, while we anticipate the longer-term impact of health care reform, this article provides a set of operational guidelines that HIV-testing and treatment sites can adopt to initiate or expand linkage services for newly diagnosed clients today.
Footnotes
Author Disclosure Statement
No competing financial interests exist.