Project CONNECT (Client-Oriented New Patient Navigation to Encourage Connection to Treatment) uses linkage coordinators to effectively engage people in HIV medical care. It focuses on people with newly diagnosed HIV or people with HIV who are transferring their care or have been out of care. AIDS Taskforce of Greater Cleveland implemented Project CONNECT as part of Using Evidence-Informed Interventions to Improve Health Outcomes among People Living with HIV (E2i), an initiative funded by the Ryan White HIV/AIDS Program (RWHAP) Part F Special Projects of National Significance (SPNS) program from 2017–2021. Project CONNECT was successful in increasing the number of clients retained in HIV care and who reached viral suppression.
People with newly diagnosed HIV or people with HIV who are transferring care may have to wait weeks or even months for an appointment with a clinician.1 As a result of these long wait times, clients may not fully engage in care.2,3 The University of Alabama at Birmingham first developed Project CONNECT in 2007 to address the challenge that one-third of clients missed their first medical appointment. AIDS Taskforce of Greater Cleveland implemented Project CONNECT to support young adults ages 18–29 years and Black gay, bisexual, same-gender loving, and other men who have sex with men. These priority populations are often in need of more culturally appropriate services.
“The need for Project CONNECT came about for individuals ages 18–29. They are the group most impacted by new HIV infections. How do we improve their health literacy and connect them with a medical home?”
AIDS Taskforce of Greater Cleveland identifies clients eligible for Project CONNECT through a testing van, onsite testing, and referrals from local hospitals and clinics. Clients are referred to Project CONNECT if they fit the priority population demographic criteria and meet one or more of the following:
- Newly diagnosed with HIV
- Out-of-care for at least 12 months
- Transferring care from another provider
Linkage coordinators meet with eligible clients soon after diagnosis or transfer to establish a rapport. A primary goal of this orientation visit is to make sure clients feel comfortable. Linkage coordinators explain that treatment is straightforward and if clients are adherent to medications, they can live long and healthy lives. U = U (Undetectable = Untransmittable) is a helpful message, as clients are often relieved to learn that people who maintain an undetectable viral load have effectively no risk of sexually transmitting the virus to a partner without HIV. Finally, linkage coordinators present health care coverage options for HIV care, including the RWHAP, to address financial concerns.
Linkage coordinators communicate regularly with clients via text or phone to remind them of appointments and check in regarding their psychosocial and physical health. If clients do not come to an appointment, linkage coordinators contact them within 24 hours to identify and address barriers. They work with other members of the care team, including case managers and clinicians, to make sure clients are connected to ongoing supports, such as mental and behavioral health supports.
Linkage coordinators conduct a biopsychosocial assessment at the orientation meeting to identify physical, emotional, and social needs and strengths, and make referrals based on findings. They also let clients know the next steps for enrolling in the RWHAP, health care coverage, and/or the AIDS Drug Assistance Program (ADAP). Finally, they schedule the first medical appointment and may even attend that appointment with clients to help them feel more confident in their care. Throughout this process, linkage coordinators provide health education, so clients understand next steps and the importance of various aspects of their treatment.
“We give them a total explanation of what the project is and how it works—building a rapport, gaining trust, empowering them, making positive suggestions, just walking them through until they can build a foundation for themselves.”
The E2i initiative measured HIV care continuum outcomes for 61 clients who participated in Project CONNECT at the AIDS Taskforce of Greater Cleveland. The study tracked linkage coordinator sessions and compared key measures at enrollment and 12 months. While greater percentages of clients were retained in care and virally suppressed at 12 months, results were not statistically significant, likely due to small sample size.
Number of linkage coordinator sessions.
Percentage of clients who were:
Source: Client-Oriented New Patient Navigation to Encourage Connection to Treatment (Project CONNECT): E2i Implementation Guide. Rockville, MD: U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau; 2021.
“Once you have individuals who trust you, then everything else falls into place.”
- Linkage coordinator qualifications. Linkage coordinator positions can be filled by case managers, social workers, peers, or anyone who is knowledgeable of HIV care and capable of establishing trust with clients. Linkage coordinators who shared background and experiences with the client population—Black gay, bisexual, same-gender loving, and other men who have sex with men—were found to better promote retention in care.
- Client recruitment. To identify clients who could benefit from Project CONNECT, providers can search internal databases and ask staff for recommendations. Publicity through social media, partnerships with other organizations, and recruitment materials placed at HIV testing sites and other locations that serve priority populations can also help providers identify potential participants.
- Choosing an assessment tool. Selecting a biopsychosocial assessment tool is an important step in planning. While providers may choose to use an existing tool, the Project CONNECT implementation manual includes example assessments related to depression, anxiety, medication adherence, and substance use disorder.
- Client incentives. AIDS Taskforce of Greater Cleveland started the program with client incentives, $25 for enrollment, $50 to stay engaged, and $100 for viral suppression. However, staff found that clients were predominately coming in for the care, not the incentives.
- Staff training. The Project CONNECT training module can help agencies interested in implementing Project CONNECT learn about the program. Videos of interactions between a fictitious client and linkage coordinator are especially useful for helping staff develop effective strategies for communicating with clients about HIV, treatment, and coverage options. The training module, which takes approximately 30 minutes, is interactive with short quizzes.
AIDS Taskforce of Greater Cleveland rebranded Project CONNECT as Brothers Health Connection for the E2i implementation. Learn more about their implementation below.
- The costs associated with Project CONNECT were related to planning, recruitment, implementation, and supervision and management. See the implementation guide for more information.
- AIDS Taskforce of Greater Cleveland currently uses internal funds to cover the cost of the linkage coordinator. Organizations that employ peers to deliver services as part of Project CONNECT may be able to cover all or part of those services through their state’s Medicaid program. RWHAP-funded organizations may be able to fund Project CONNECT under Early Intervention Services.
“We are so happy with Project CONNECT and have seen a lot of success. It fills a great need in the community, and we really want to keep it going.”
- AIDS Taskforce of Greater Cleveland started the project with people who needed to be linked to HIV care, and then expanded the scope to include individuals who were engaged in care but not virally suppressed. Staff realized that many clients are at risk of falling out of care or are not adherent to medications, and can benefit from additional support. Linkage coordinators (referred to as life coaches with the expanded population) use motivational interviewing and client agreements with tailored plans to promote behavioral change.
- As members of the community, peer linkage coordinators can help spread the word about the program. However, if peer linkage coordinators interact with clients in social settings, they need to maintain client confidentiality. AIDS Taskforce of Greater Cleveland also promotes client confidentiality by allowing clients to enter through the back door or meeting them in public places, instead of the facility.
- Clinics may be hesitant to refer clients to Project CONNECT for fear of losing their client base. AIDS Taskforce of Greater Cleveland emphasizes to partners that their clients can retain their existing medical providers, and Project CONNECT provides additional engagement and adherence support.
- Programs with more than one linkage coordinators should try to ensure that the linkage coordinator who initially contacts the client is the same one who does the orientation visit and provides ongoing supports.
- Social media can supplement the initiative by presenting HIV in a positive light and reducing stigma. It can also serve as a mechanism to receive questions and feedback from clients.
- Client-Oriented New Patient Navigation to Encourage Connection to Treatment (Project CONNECT): E2i Implementation Guide. Rockville, MD: U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau; 2021.
- Mugavero MJ, Westfall AO, Cole SR. Beyond core indicators of retention in HIV care: Missed clinic visits are independently associated with all-cause mortality. Clin Infect Dis. 2014;59(10):1471–1479.
- Mugavero MJ, Lin HY, Allison JJ, et al. Failure to establish HIV care: Characterizing the “no show” phenomenon. Clin Infect Dis. 2007;45(1):127-130.