Resources (monographs, implementation manuals, mobile apps and text messaging) from ten demonstration sites that participated in Use of Social Media to Improve Engagement, Retention, and Health Outcomes along the HIV Care Continuum, a HRSA HIV/AIDS Bureau Special Projects of National Significance (SPNS) Program initiative.
This initiative focused on innovative social and digital media methods designed to identify, link, and retain underserved, uninsured, hard-to-reach youth and young adults (aged 13-34) with HIV in primary care and supportive services. Methods included a variety of social media, internet, and mobile-based technologies to improve engagement and retention in care, and viral suppression.
Replicating the Interventions
Some sites developed interventions that are ready to adopt and implement (e.g., Positive Peers, YGetIt, Text-Me Girl). Others provide ideas for replication, with resources and lessons learned for teams developing their own interventions. The following summaries include monographs and implementation manuals for use in replicating these programs. Descriptions highlight apps and text messaging/social media communications developed by sites. Some apps are available for download and use. Websites and contact persons can provide specifics on available formats (IOS, Android), audiences, features, and any tailoring that would be necessary.
The Washington University, Saint Louis, MO
The intervention used a combination of texting, videos posted via YouTube and other social networks, and an online support group to improve engagement of the target population along the HIV care continuum.
E-Volution Text Messaging. E-VOLUTION's two-way text messaging system was developed using the Epharmix, Inc. mHealth platform. Features included automated text messaging (medication and appointment reminders, staff check-ins with clients) and person-to-person text messaging between clients and case managers. The project targeted audience is youth and young adults living with HIV.
San Francisco Department of Public Health, San Francisco, CA
This project implemented digital navigation services encompassing a variety of text, mobile app, and social network platforms. The approach included creating a digital and social media safety net to identify, engage, and retain youth and young adults living with HIV in San Francisco.
Health eNav Text Messaging. Health ENav's website-based text messaging portal provided HIV care navigation services, health promotion and education, motivational interviewing, and digital social support. The program also incorporated automated check-ins on adherence and health status.
Pennsylvania State University, Hershey, PA
The intervention promoted the OPT-In For Life app and social media sites for current and newly enrolled Part C patients aged 13-34. The Part C clinics in the region utilized a select portion of the OPT-In app that allows for confidential messaging between patient and provider as a means to retain them in care and to encourage medication adherence and safer lifestyles.
Opt-in for Life App. The Opt-In for Life app was developed by an mHealth platform company. Adaptation for another agency would entail costs. The app is for young adults living with HIV. App features included management of HIV medical data (e.g., viral load, CD4 counts), medication and appointment reminders, text messaging for confidential communications between patients and clinic staff, and telehealth. Links to social media sites were used on the platform to convey education about HIV and healthy living.
Positively Connected for Health (PC4H) - Mobile App
Philadelphia FIGHT, Philadelphia, PA
PC4H is structured to reach youth through three distinct yet coordinated social media approaches, including the iknowUshould2 platform, the TreatYourSelf mobile app, and APPlify Your Health.
TreatYourSelf App. The TreatYourSelf app supported ART adherence among youth living with HIV. The app allowed users to document their adherence and receive immediate feedback and incentives. Medication reminders were time-based and time/location-based. The app also allowed for social support among users.
The Metro Health System, Cleveland, OH
The Positive Peers Application (PPA) is a web-based mobile application for youth and young people aged 13-34 living with HIV. It featured information, social networking, and self-management tools to support HIV-related holistic care.
Positive Peers App. The app and a companion social media and website serve to engage young people in holistic HIV care within a private, stigma-free, supportive online community. Functions include: health information; social networking in community and private chats; and health management tools. Organizations can register as program partners. Patients can also register to use the app, independent of their care agencies. Learn more and download the Positive Peers app.
Howard Brown Health Center (HBHC), Chicago, IL
SMARTEE (SPNS Social Media: Howard Brown Health Center, Chicago) stands for Social Media App for Retention, Treatment, Engagement and Education. Through the use of a downloadable smart phone app or web portal, this social media intervention engaged young men who have sex with men (YMSM) and transwomen of color aged 13 to 34 who are patients at HBHC. The SMARTEE intervention design was, optimally, for use by agencies providing HIV medical care and support services and utilizing electronic health records in a patient-centered medical home setting.
SMARTEE App. The project used Healthvana, a HIPAA compliant mobile app to support care engagement and ART adherence. Users could access lab results/health information and message staff. The target population was people living with HIV as well as those newly diagnosed.
Friends Research Institute, Inc., Los Angeles, CA
Text Me, Girl! was a text-messaging intervention for young trans women living with HIV to support retention in care and ART adherence. The SMS (short message service) gateway provider Qualtrics hosted on their HIPPA secure server. Text messages used in the project were theory-based and transmitted over a 90-day period. At the end of this cycle, enrollees had the option to opt-in or opt-out to received ongoing weekly post-intervention messages from HRSA's UCARE4LIFE library (i.e., not theory-based and not trans-specific).
Text Me, Girl! Text Messaging. This project's text messaging was a one-way (non-interactive) text-messaging intervention for young trans women living with HIV to support retention in care and ART adherence. The SMS (short message service) gateway provider Qualtrics hosted services on their HIPPA secure server. The text-message library used in the project was theory-based and sent several messages each day over a 90-day period. At the end of this cycle, enrollees had the option to opt-in or opt-out to receive ongoing weekly text-messages from HRSA's UCARE4LIFE library (i.e., not theory-based and not trans-specific). A similar library of text messages is also available for gay and bisexual men who use methamphetamine. Text-message libraries should be vetted and updated for local context and language with community or patient advisory boards. Request access to the text-message libraries from Dr. Cathy Reback
Wake Forest University, Winston-Salem, NC
The intervention harnessed established social media commonly used by young MSM and transgender women, including Facebook, text messaging, and established GPS-based mobile applications.
weCare Text Messaging. This project utilized established social media to communicate with MSM and transgender women ages 16-34 to demystify HIV treatment and help engage and support clients in care. A Cyber Health Educator used social media to communicate with participants, using theory-based messages that relate to the person's place on the HIV care continuum.
Coastal Bend Wellness Foundation Inc., Corpus Christi, TX
The project adapted the Antiretroviral Treatment and Access to Services (ARTAS) evidence-based intervention (EBI) for implementation via social media platforms (Mobile ARTAS), in order to engage recently diagnosed youth into HIV care.
New York State Department of Health, Menands, NY
YGetIt? focused on facilitating entry of young people (ages 18-34) into HIV care, prevention of vulnerable youth from dropping out of care, and achievement of sustained viral load suppression among those in care. The project developed a mobile app and the "Tested" digital comic series, available online for free with educational content on all aspects of the HIV care continuum, COVID-19, and related topics from the perspective of a diverse cast of characters at-risk for and living with HIV.
YGetIt? App. This project's mobile app was developed in collaboration with Mt. Sinai App Lab and Peer Engagement and Educator Professionals (PEEPs). The app was used at two engagement hubs: Montefiore AIDS Center, and Long Island Crisis Center. The YGetIt? app features secure login and confidentiality, direct messaging for patients and providers, self-tracking, education and information, and design for privacy. Learn more and inquire about downloading and adapting the app for your agency.
Brooks RA, Swendeman D, Hannay J. Special Projects of National Significance Social Media Initiative: Improving Health Outcomes Along the HIV Care Continuum in Youth and Young Adults Living With HIV [published online ahead of print, 2020 Aug 6]. Health Promot Pract. 2020. doi.org/10.1177/1524839920944806.
Brooks RA, Nieto O, Swendeman D, et al. Qualitative Evaluation of Social Media and Mobile Technology Interventions Designed to Improve HIV Health Outcomes for Youth and Young Adults Living With HIV: A HRSA SPNS Initiative [published online ahead of print, 2020 Aug 6]. Health Promot Pract. 2020;1524839920938704. doi:10.1177/1524839920938704.
Reback CJ, Fletcher JB, Kisler K. Text Messaging Improves HIV Care Continuum Outcomes Among Young Adult Trans Women Living with HIV: Text Me, Girl! [published online ahead of print, 2021 Jun 24]. AIDS Behav. 2021; doi: 10.1007/s10461-021-03352-3.
Gerke DR, Step MM, Rünger D, et al. Associations Between Social Support and Social Media Use Among Young Adult Cisgender MSM and Transgender Women Living With HIV [published online ahead of print, 2020 Aug 6]. Health Promot Pract. 2020;1524839920936248. doi:10.1177/1524839920936248.
Gerke DR, Glotfelty J, Schlueter J, Freshman M, Plax K. E-VOLUTION: A Text Messaging-Powered Intervention-Connection, Support, and HIV Eradication [published online ahead of print, 2020 Aug 6]. Health Promot Pract. 2020;1524839920936242. doi:10.1177/1524839920936242.
Zurlo J, Du P, Haynos A, Collins V, Eshak T, Whitener C. OPT-In For Life: A Mobile Technology-Based Intervention to Improve HIV Care Continuum for Young Adults Living With HIV [published online ahead of print, 2020 Aug 6]. Health Promot Pract. 2020;1524839920936247. doi:10.1177/1524839920936247.
Arayasirikul S, Turner C, Trujillo D, Le V, Beltran T, Wilson EC. Does the Use of Motivational Interviewing Skills Promote Change Talk Among Young People Living With HIV in a Digital HIV Care Navigation Text Messaging Intervention? [published online ahead of print, 2020 Aug 6]. Health Promot Pract. 2020;1524839920936246. doi:10.1177/1524839920936246.
Step MM, Knight K, McMillen Smith J, Lewis SA, Russell TJ, Avery AK. Positive Peers Mobile Application Reduces Stigma Perception Among Young People Living With HIV [published online ahead of print, 2020 Aug 6]. Health Promot Pract. 2020;1524839920936244. doi:10.1177/1524839920936244.
Tanner AE, Mann-Jackson L, Song EY, et al. Supporting Health Among Young Men Who Have Sex With Men and Transgender Women With HIV: Lessons Learned From Implementing the weCare Intervention [published online ahead of print, 2020 Aug 6]. Health Promot Pract. 2020;1524839920936241. doi:10.1177/1524839920936241.
Tanner AE, Mann L, Song E, Alonzo J, Schafer K, Arellano E, Garcia JM, Rhodes SD. weCARE: A social media–based intervention designed to increase HIV care linkage, retention, and health outcomes for racially and ethnically diverse young MSM. AIDS Education and Prevention. 2016 Jun;28(3):216-30. PMCID: PMC5010783.
Marcu G, Dowshen N, Saha S, Sarreal RR, Andalibi N. TreatYoSelf: Empathy-driven behavioral intervention for marginalized youth living with HIV. In Proceedings of the 10th EAI International Conference on Pervasive Computing Technologies for Healthcare 2016 May 16 (pp. 69-76). ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering).
- Tanner AE, Song EY, Mann-Jackson L, Alonzo J, Schafer K, Ware S, Garcia JM, Arellano Hall E, Bell JC, Van Dam CN, Rhodes SD. Preliminary Impact of the weCare Social Media Intervention to Support Health for Young Men Who Have Sex with Men and Transgender Women with HIV. AIDS Patient Care STDS. 2018 Nov;32(11):450-458. doi: 10.1089/apc.2018.0060.
- Reback CJ, Rünger D. Technology use to facilitate health care among young adult transgender women living with HIV, AIDS Care. 2019 Aug 12. doi: 10.1080/09540121.2019.1653439. PMID: 31405287.
- Reback CJ, Fletcher JB, Fehrenbacher AE, Kisler K. Text Messaging to Improve Linkage, Retention, and Health Outcomes Among HIV-Positive Young Transgender Women: Protocol for a Randomized Controlled Trial (Text Me, Girl!). JMIR Res Protoc. 2019 Jul 29;8(7):e12837. doi: 10.2196/12837. PMID: 31359867; PMCID: PMC6690158.
- Medich M, Swendeman DT, Comulada WS, Kao UH, Myers JJ, Brooks RA; Special Projects Of National Significance Social Media Initiative Study Group. Promising Approaches for Engaging Youth and Young Adults Living with HIV in HIV Primary Care Using Social Media and Mobile Technology Interventions: Protocol for the SPNS Social Media Initiative. JMIR Res Protoc. 2019 Jan 31;8(1):e10681. doi: 10.2196/10681. Erratum in: JMIR Res Protoc. 2019 Sep 09;8(8):e15660. PMID: 30702434; PMCID: PMC6374729.
- Trujillo D, Turner C, Le V, Wilson EC, Arayasirikul S. Digital HIV Care Navigation for Young People Living With HIV in San Francisco, California: Feasibility and Acceptability Study. JMIR mHealth and uHealth. 2020;8(1):e16838. PMID: 31922489.
- Arayasirikul S, Trujillo D, Turner CM, Le V, Wilson EC. Implementing a Digital HIV Care Navigation Intervention (Health eNav): Protocol for a Feasibility Study. JMIR research protocols. 2019;8(11):e16406. PMCID: PMC6874804.
- Turner CM, Arayasirikul S, Trujillo D, Lê V, Wilson EC. Social inequity and structural barriers to completion of ecological momentary assessments for young men who have sex with men and trans women living with HIV in San Francisco. JMIR mHealth and uHealth. 2019;7(5):e13241. PMCID: PMC6530262.
Step MM, McMillen Smith J, Kratz J, Briggs J, Avery A. “Positive Peers”: Function and Content Development of a Mobile App for Engaging and Retaining Young Adults in HIV Care. JMIR Form Res 2020;4(1):e13495. PMCID: PMC7055772.