The Positively Connected for Health (PC4H) initiative employs a mobile app and a digital literacy workshop to improve engagement, retention in care, and medication adherence for young people with HIV. These strategies aim to reach young people who are disproportionately affected by HIV, including young men who have sex with men, young transgender women, and youth of color, with a focus on serving people who know their status but are inconsistently engaged in care. Developed by Children’s Hospital of Philadelphia (CHOP) and Philadelphia FIGHT (a Federally Qualified Health Center), PC4H was evaluated through the Ryan White HIV/AIDS Program (RWHAP) Part F Special Projects of National Significance (SPNS) Social Media Initiative. The evaluation found that PC4H had positive impacts on retention in care and viral suppression.
Philadelphia, PA
In Philadelphia, youth aged 13–24 make up approximately 24% of all newly diagnosed HIV infections.1 Youth with HIV have lower rates of viral suppression than people with HIV overall, and lower medication adherence than any other age group.2 Social media and mobile applications may offer effective ways to engage people in care and to promote medication adherence, especially for young people who use technology frequently. PC4H was developed to address the unique needs of adolescents and young adults with HIV in Philadelphia by using mobile technology to increase their progress along the HIV care continuum, specifically to reach viral suppression and improve engagement in care.
The TreatYourSelf mobile app for Android has multiple features that help youth stay engaged in care, including:
- Reminders: Includes both time and location-based daily medication reminders, appointment and refill reminders, and a calendar for tracking antiretroviral therapy (ART) adherence. Push notifications and editable messaging offer multiple ways for participants to customize their reminders, which are designed for daily use.
- Provider communication: Participants can text or call their providers or support people directly within the app.
- Peer connection: The app’s gamification component allows participants to choose avatars to earn ART adherence points on a leaderboard, access discussion forums, and give and receive peer-to-peer kudos.
- Additional resources: The app offers lists of resources in the community and a detailed frequently asked questions page to help users learn about the app’s features and access technical support.
APPlify Your Health is an in-person, one-day digital health literacy workshop to support use of the TreatYourSelf mobile app. APPlify Your Health was adapted from a pre-existing Philadelphia FIGHT digital literacy health workshop to better serve the needs of young people using the app. The workshop aims to help participants fully understand all features of the TreatYourSelf app, and develop strategies and digital behavior best practices to overcome challenges and support health goals, including when using other types of mobile technology. The workshop includes specific exercises and questions to help participants build their technological skills, learn how app features can support medication adherence, and gain experience in analyzing online health information.
Forty-eight participants were enrolled in the intervention. The average age of participants at baseline was 25.5 years old, and most were male (75%) and Black or African American (69%). Over two-thirds of participants (67%) reported unsuppressed viral loads at baseline, and almost half (46%) had been out of care for six months or more at time of enrollment. Nearly all (94%) owned smartphones, and participants used their phones for 11 hours a day on average. PC4H was evaluated in 2017-2018 using a pre-post design, with participants followed-up at defined intervals (3, 6, 12, and 18 months). PC4H had positive impacts on retention in care and viral suppression.
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Source: Children’s Hospital of Philadelphia, Philadelphia FIGHT. Positively Connected for Health (PC4H): Use of Social Media to Improve Engagement, Retention, and Health Outcomes along the HIV Care Continuum. March 2020
“My favorite feature about the app was that it really did remind me at the time I need to take my meds.”
CHOP and Philadelphia FIGHT designed the intervention for adaptation and use in clinical settings serving adolescents and young adults with HIV, and drew on multiple theoretical frameworks to best engage, serve, and involve young people in their own care. Planning and implementation tasks included:
App development and roll-out. Preparation for technical roll-out included polling participants about their phone types, developing the app, usability testing, staff training, and planning for data collection in Research and Evaluation Data Capture (REDCap)—a web-based, open-source database platform which allows for easy instrument and survey creation.
Participant recruitment. Youth and young adults were recruited for the intervention through clinic flyers, provider referral, direct patient outreach, and medical chart review.
Marketing and promotion. Community partners and other stakeholders collaborated on the development of flyers and held outreach events. Several other CHOP and FIGHT initiatives, including FIGHT’s AIDS Education Month events and CHOP’s iknowUshould2 social media campaign, helped publicize PC4H in the community.
Collaboration with stakeholders. In developing the intervention multiple stakeholders were consulted, including clinicians at different CHOP and FIGHT clinics, community partners, technology support partners at Drexel University, and in-house partners at FIGHT and CHOP. In addition, The Youth Community Advisory Board, which is part of the Adolescent Initiative at CHOP, participated in the app development process by providing feedback on the app design, features, and marketing, and selecting the app name and icon.
Hiring developers and creating a unique smartphone application can be costly and time-consuming, and implementation sites may incur additional ongoing costs to purchase phones and phone plans for participants. While CHOP and Philadelphia FIGHT originally planned to create both Android and iPhone versions of the TreatYourSelf mobile app, the development process saw significant delays and setbacks, and as a result the intervention was developed as an Android app only. For this reason, the initiative had to purchase Android phones and phone plans for participants who did not have an Android phone. As of 2022, the COP team is working to address this limitation by seeking out funding to further expand and develop TreatYourSelf mobile apps for non-android devices and tablets, and exploring a potential web application that can be accessed through any web browser.
“We recommend setting aside funds to provide smartphones and 1-year unlimited data plans as a digital health equity strategy. This would support patients particularly [those] at risk of being lost to care or struggling with adherence who do not have Android phones.”
CHOP and Philadelphia FIGHT funded the development and demonstration of PC4H with RWHAP Part F SPNS funds. PC4H has since been collaborating with fellow SPNS recipients from Penn State who were developing a similar mobile health project. The collaboration has allowed PC4H and Penn State to elevate the most successful aspects of both interventions and work on expanding across broader geographical areas. The collaboration is continually exploring options for additional funding from sources including federal, state, and local health departments, and private industry such as pharmaceutical companies.
From 2020–2022, the TreatYourSelf app has been supported by CHOP and the Philadelphia Department of Public Health to expand services to youth in Philadelphia who need support in taking pre-exposure prophylaxis (PrEP) for HIV prevention. The app’s features have been enhanced to provide PrEP resources, push notification messaging of local events and information (COVID-19, mpox, health events, job fairs, etc.), and additional forum topics for the discussion board. In addition, the current Android app’s security, maintenance, hosting, and other requirements for the Google Play store have been updated. The team continues to offer this intervention to providers in Philadelphia as a supplemental HIV prevention and treatment tool.
- Participant enrollment took more time than anticipated, but clinical buy-in and communication helped facilitate progress. Staff turnover at clinical sites hampered enrollment. Providers can play an active role in identifying and recruiting potential participants and in establishing reliable communication strategies.
- As noted above, the intervention was ultimately developed as an Android app only which resulted in the need to purchase Android phones and phone plans to allow for participation for people who did not own Android phones. This approach may be both a funding and logistical barrier for replication by others, and thus sites should consider whether adapting a preexisting smartphone application can serve the needs of the intervention.
Dowshen N, Lee S, Min J, Lalley-Chareczko L, Koenig H. A medication adherence and engagement in care mobile application for youth living with HIV: Usage and feasibility. J Adolesc Health, 2020; 66(2):S126-S127. doi.org/10.1016/j.jadohealth.2019.11.253
