The New York State Department of Health AIDS Institute established the YGetIt? Program to engage youth and young adults (ages 18–34) with HIV in care through three components: a health management mobile application (GET!), Peer Engagement Educator Professionals (PEEPs), and a graphic serial (Tested). YGetIt? was developed and implemented from 2015 to 2019 as part of a Ryan White HIV/AIDS Program (RWHAP) Part F Special Projects of National Significance (SPNS) initiative. Tested received over 200,000 views, and viral suppression rates among YGetIt? participants increased from 79% to 86% over the course of the program.
Long Island , NY
Youth and young adults (ages 13–34) with HIV may have trouble adjusting to a new diagnosis and navigating complex healthcare systems. These barriers can be compounded by everyday challenges youth face transitioning to adulthood. As a result, they often have lower viral suppression rates than their older counterparts.1 Social media can be an effective strategy for engaging youth in care given that youth commonly use these platforms and mobile devices for communication and information sharing.2
PEEPs educated, supported, and motivated YGetIt? participants by leveraging their shared experience. Located at two engagement hubs, Pride for Youth Long Island Crisis Center and North Shore University Hospital, they helped participants navigate and access care and services. PEEPs communicated with participants in person and through the GET! application, using both standardized and tailored messages.
The AIDS Institute partnered with Mt. Sinai AppLab to develop GET!. Through the application, users were able to securely communicate with PEEPs and had access to educational information, a resource directory, and medication, appointment, and lab value trackers. Videos on the app shared positive messages of health and wellness from healthcare professionals, peers, and celebrities. GET! also offered mechanisms for users to provide feedback (e.g., surveys, bug reporting). The application guaranteed user privacy through security features and had an engaging, yet “inconspicuous” design.
Tested stories reflected the experiences and challenges faced by youth, including those with HIV and/or struggling with mental health or substance use issues. Each season of Tested had 12 episodes with five panels or graphics per episode. These narratives appealed to youth by reflecting current events, cultural styles, and norms. Tested was a feature within GET! and promoted through other social media platforms and the online comic forum, Webtoons.com.
The AIDS Institute and its evaluation contractor, CUNY School of Public Health Evaluation Center, evaluated the impact of YGetIt? with 104 individuals aged 18–34 years who could read and speak English; 54 people qualified for the SPNS multi-site evaluation (new diagnosis of HIV and not engaged in care or virally suppressed). Participants in both groups experienced an increase in viral suppression rates over the course of the two-year intervention from 2017 to 2019, although findings were not statistically significant.
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Source: YGetIt? Project: Using Social Media to Do What You Need to Do, Demonstration Site Summary, March 2020.
Stakeholder engagement. Stakeholders, including the AIDS Institute Young Adults Consumer Advisory Committee, provided feedback throughout the process, validating evidence that youth like to engage with technology and social media to access information. The AIDS Institute also promoted YGetIt? during regular calls with subrecipients.
Engagement hubs and participant recruitment. Although YGetIt? was an online initiative, two locations served as engagement hubs: Pride for Youth Long Island Crisis Center and North Shore University Hospital. These organizations provide HIV clinical and/or support services and housed the PEEPs for recruitment and enrollment activities. PEEPs shared information about GET! when young people came in for clinical or support services or support groups.
PEEP recruitment and training. PEEPs were individuals with lived experience who demonstrated skills with technology and social media, and the ability to connect with youth with HIV. They received training on YGetIt?, GET! technology, the HIV care continuum, and communicating crucial information about HIV care engagement with cultural sensitivity.
Comic graphic serial production team: A writer, illustrator, and social media coordinator developed the content for Tested with input from the PEEPs and other members of the YGetIt? team. Development of relevant and meaningful content was time-consuming as it involved garnering ideas from multiple people knowledgeable about youth preferences.
GET! app development and content. The AIDS Institute established a contract with Mt. Sinai AppLab to develop the application. It was an iterative process “fraught with fits and starts” due to system glitches. Content of the messages that PEEPs shared through GET! was developed through the UCare4Life Patient Text Message Inventory, engagement hubs feedback, and the YGetIt? team.
YGetIt? required a program management team (a project Principal Investigator, Program Director, and Program Coordinator), the Tested production team and social media intern, PEEPs, staff from engagement hubs, and staff from the technology hub, which maintained the GET! application, provided tech support, and produced user guides. These positions were funded through the SPNS grant. YGetIt? also received in-kind support from individuals and businesses on logo development and promotional activities.
- Recruitment of youth was challenging. Clients at Pride for Youth Long Island Crisis Center were more interested in spending time at the center to socialize and relax than engage in healthcare. Initially, it was hard to get staff at the clinical site, North Shore University Hospital, engaged to follow the recruitment protocol. However, through continuous communication about the program, recruitment picked up.
- Technology glitches can severely decrease usage of an app. Therefore, beta testing must be extensive, and glitches addressed immediately. Application developers should also be experienced in healthcare systems and Health Insurance Portability and Accountability Act (HIPAA) standards to expedite roll-out.
- Instagram was the most successful avenue for disseminating Tested. During a Tested season, episodes were posted weekly at “high traffic” times. Off-season, other content was shared to keep user interest. A dedicated social media intern, an expert in these platforms and the youth age demographic, helped make dissemination a priority.
- GET! app usage gradually decreased over time, and some users did not respond to PEEP messages. Providers should keep in mind that people will use these applications in different ways, which can complicate evaluation efforts.
“A user was unstably housed and did not respond to their care team’s traditional outreach methods: phone calls, letters, emails, and home visits. However, they did reach out to their care team exclusively via the PEEP messenger to reengage in care. The messenger allowed this user to build rapport with a PEEP and facilitated care logistics.”
