The Special Projects of National Significance (SPNS) Program initiative "Use of Social Media to Improve Engagement, Retention, and Health Outcomes along the HIV Care Continuum" implemented and evaluated innovative social media methods to identify, link, and retain HIV positive, underserved, underinsured, hard-to-reach youth and young adults (aged 13-34) in HIV primary care and supportive services. The demonstration sites used system approaches utilizing a variety of social media, internet, and mobile-based technologies to improve engagement and retention in care, and viral suppression.
Demonstration sites worked collaboratively with an Evaluation and Technical Assistance Center (ETAC) throughout the four-year project period to collect and report evaluation data and disseminate successful models to the larger public health community. Social media interventions focused on youth and young adults with HIV (aged 13-34) who were aware of their HIV infection status, but have never been engaged in care, were aware of status but had refused referral to care, had dropped out of care, were infected with HIV but are unaware of their HIV status, or had not reached viral suppression.
Summary monographs, replication manuals, and lists of publications recently released and can be found on TargetHIV.
Coastal Bend Wellness Foundation Inc., Corpus Christi, TX
The Coastal Bend Wellness Foundation (CBWF) served 12 counties within the Texas Public Health Region 11. CBWF developed an internet-based model to increase HIV status awareness, engagement and retention into care, and achievement of viral suppression, titled Wellness Web 2.0. It sought to reach youth and young adults with HIV in Corpus Christi, Laredo, and San Antonio areas. The demonstration adapted the ARTAS evidence-based intervention for implementation via social media platforms. Many young people reached were of Latino heritage.
Friends Research Institute (FRI), Inc., Los Angeles, CA
FRI sought to reach young transgender women facing a number of structural and psychosocial challenges to care, including discrimination, prejudice, stigmatization, and social and economic marginalization. FRI developed a one-way text messaging intervention called Text Me Girl. During a 90-day period, participants received daily theory-based three culturally-specific text messages derived, in part, from the HRSA-funded UCARE4LIFE library. Each daily message corresponded with one of three components of the HIV Care Continuum: 1) HIV positivity/physical and emotional health; 2) linkage/retention in HIV care; and, 3) ART medication adherence/viral load suppression. Following the 90-day intensive intervention, participants were able to receive weekly text-messages reinforcing ongoing retention in care and medication adherence.
Health Research, Inc., (d.b.a. New York AIDS Institute, NYAI), New York State Department of Health, Menands, NY
Seeking to reach culturally-diverse audience of young people with HIV in outer Queens and inner Nassau County on Long Island, NY, NYAI developed an intervention called Y Get It? (YGI). YGI used a HIV focused health management mobile device application (get!), linked with Peer Engagement Educator Professionals (PEEPs) and a web-based graphic serial (Tested). The primary aims of YGI were to facilitate the timely entry of young people into HIV care, reinforce resiliency with regard to social determinant of health challenges that often impede staying in care and reaching sustained viral suppression among those in care. Organizational partners included Northwell Health System's North Shore Community Hospital, Mt. Sinai Health System's App Lab, Hunter College's School of Public Health, and Youth Pride of the CBO Long Island Crisis Center. Tested sought to reinforce retention in care by helping young people consider coping strategies for social barriers to health care. Tested, is now available to a wider audience via Webtoons. Five "seasons" have been published, and a sixth one is in development. NYAI is now replicating use of YGI in other parts of New York City and State.
Howard Brown Health Center (HBHC), Chicago, IL
In partnership with Healthvana, a software company that has worked with specialty HIV healthcare providers, HBHC developed SMARTEE, social media intervention that integrated and structured smart phone technology and social media along the HIV care continuum. Through the use of a smart phone app and web portal, SMARTEE sought to engage young men who have sex with men (YMSM) and transwomen of color. Retention in Care Specialists (RICS) used the model to work with clients in identifying and addressing barriers to care, and improve treatment adherence and retention in healthcare. With the app, clients had access to personal test results and health information to increase health literacy. Clients also had the ability to update contact information when it changed (which was often), so that the RICS could keep in contact and lessen the risk of loss to care. A HIPAA-compliant direct messaging feature allowed clients and staff to discuss client needs and coordinate care and services in a familiar, convenient method. RICS were also able to reinforce appointment reminders, conduct personal check-ins on mood and mental wellness, and schedule appointments.
The Metro Health System (MHS), Cleveland, OH
MetroHealth (MHS) HIV Clinic's created a web-based mobile application for young people with HIV in Cuyahoga County, OH, Positive Peers (PP). PP functions included health management tools such as medication reminders, educational blogs, relaxation videos, curated community resource referrals, social networking in a community forum, private chats, user personalization, and user-controlled privacy. The defining feature of Positive Peers was 24/7 access to a supportive community of young people with the shared experience of living with HIV via chat functions. MHS developed PP in partnership with Blue Star Design and Blackbird Digital. The Kent State University College of Public Health conducted the outcomes evaluation. It is now available for adaptation and use by other HIV services programs in the U.S.
Pennsylvania State University School of Medicine (PSUSM), Hershey, PA.
Using technology that had been pilot-tested at the Milton S. Hershey Medical Center for other health conditions, PSUSM developed a culturally-specific HIPAA-compliant mobile phone app for young people with HIV being served by local RWHAP Parts B and C funded sites. Titled Opt-in for Life, the app linked web-based resources about HIV and healthy living, a secure, two-way text message communication between patients and care team members, access to HIV-related laboratory results, journaling features, medication and appointment reminders, and telehealth capabilities. To reinforce app use, PSUMC placed complementary banner ads on existing social media sites and dating apps that were popular in the predominantly rural region.
Organizational partners included Pinnacle Health, Alder Health Services, and the Hamilton Health Center. PSUSM is now in discussion with three regional sub-entities of Pennsylvania's Part B program to replicate the intervention with a wider audience of people with HIV.
Philadelphia FIGHT, Philadelphia, PA
Philadelphia FIGHT (PF), in collaboration with the Adolescent HIV Initiative at Children's Hospital of Philadelphia (CHOP), developed a comprehensive social media intervention titled Positively Connected for Health (PC4H). PC4H was structured to reach young people through three distinct yet coordinated digital media approaches: an existing iknowUshould2 platform (which promoted HIV counseling and testing, funded through other sources), TreatYourself, a culturally-specific, android-based mobile app developed for people with HIV, and APPlify Your Health, a youth-centered individualized digital health literacy consultation. The goals of PC4H were to increase awareness of HIV status among high-risk young people, increase linkage to and retention in care among newly diagnosed and out of care young people with HIV, increase medication adherence, and enhance overall health-seeking behaviors. PC4H's focus was on young people with HIV being served at five PF and CHOP clinics. Software was developed in partnership with Drexel University's College of Computing and Informatics. The intervention is now being replicated in other parts of the City of Philadelphia, and components of TreatYourself are being used in apps being developed in other parts of the U.S. and Nigeria.
Public Health Foundation Enterprises, Inc., San Francisco Department of Public Health, CA
Focusing on young MSM and transgender women with HIV, the San Francisco Department of Public Health (SFDPH) will developed Health eNav, a model of HIV care using digital and social media technologies, linked with a health e-navigator. Based on primary care medical home concepts, Health eNav demonstrated of three digital innovations: (1) digital HIV care navigation using social media platforms, (2) digital care circles using a secure text messaging platform, and (3) digital sensing using ecological momentary assessments. It provided young people with HIV with six months of Digital HIV Care Navigation focused on: 1) HIV care navigation, 2) health promotion, 3) motivational interviewing, and 4) digital social support. Health eNav sought to use social media and digital technologies to extend supportive care structures beyond clinic walls and operational hours, when newly diagnosed, out-of-care and not virally suppressed young people with HIV needed support most. An integrated social media dashboard helped geo-locate, identify, and communicate across mainstream social media platforms, including but not limited to Facebook, Twitter, YouTube, Tumblr, kik, Snapchat, and Instagram. Since this demonstration finished, it is now being expanded to serve other parts of the San Francisco EMA.
Wake Forest University, Winston-Salem, NC
Wake Forest University developed a digital system, We Care, to improve linkage to care from HIV counseling and testing, retention in care, and health outcomes among underserved, underinsured, and hard-to-reach, ethnically diverse MSM with HIV. The intervention linked social media platforms commonly used by young MSM, text messaging, and established GPS-based mobile applications in a personalized way. A HIPAA-compliant text messaging system regularly reminded enrollees of appointments and medication refills, conducted mood check-ins, celebrated positive milestones (e.g., birthdays and anniversaries), highlighted community health resources, and gave tips regarding problem solving. Messages usually ended with a question to elicit acknowledgements and responses from recipients. Cyber health educators would then follow-up with client support as needed. Geolocation features and a secret Facebook group assisted with engaging clients in rural locations. Staff at this demonstration site are now promoting replication of this intervention with other HIV service providers in the southeast U.S.
The Washington University, Project ARK, Saint Louis, MO
Project ARK (AIDS/HIV Resources and Knowledge) developed E-VOLUTION, an automated two-way text messaging app that coupled live text messaging between medical case managers and links to digitally based HIV and health resources. The E-VOLUTION texting intervention included two components: an automated two-way text messaging system, and live text messaging between medical case managers (MCMs) and youth/young adults with HIV. The automated two-way text messaging system offered the ability to alert members of the care team, in real-time, allowing for expedited intervention. Then, person to person text messaging between the participants and MCMs provided follow-up of participant needs identified by the automated system. Project ARK is now working with Part A recipients in MO and the MO Part B program to replicate this intervention in other parts of the state. E-VOLUTION is also available for adaptation and use by other HIV services providers.
University of California at Los Angeles, CA, Evaluation and Technical Assistance Center (ETAC)
The University of California at Los Angeles (UCLA) served as the Evaluation and Technical Assistance Center (ETAC) for this initiative. The ETAC coordinated the multi-site evaluation, provided programmatic technical assistance to the demonstration sites, and has been leading the publication and dissemination of findings, best practices and lessons learned. UCLA is now working with the SPNS Program to disseminate findings, support replication of intervention models, and publish the multi-site evaluation. A focus issue of Health Promotion Practice, a publication of the Society for Public Health Education, features eight articles on the initiative. It was released online in August 2020. Other articles related to overall outcomes in the initiative, cost data, implementation lessons learned, and impact on HIV stigma are in development and will appear in peer-reviewed publications during the last quarter of 2020 and early in 2021.
A series of articles from the initiative are published in the September 2020 edition of Health Promotion Practice, by the Society for Public Health Education. Online open access editions are available as of August 7, 2020. Sagepub articles.
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?. Health Promot Pract. 2020;21(5):738-743. doi:10.1177/1524839920936246. PubMed Abstract.Full Text.
Arayasirikul S, Turner C, Trujillo D, Le V, Wilson EC. Efficacy and Impact of Digital HIV Care Navigation in Young People Living With HIV in San Francisco, California: Prospective Study. JMIR Mhealth Uhealth. 2020;8(5):e18597. Published 2020 May 8. doi:10.2196/18597. PubMed Abstract.Full Text.
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 Res Protoc. 2019;8(11):e16406. Published 2019 Nov 8. doi:10.2196/16406. PubMed Abstract.Full Tex.
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. Health Promot Pract. 2020;21(5):690-692. doi:10.1177/1524839920944806. PubMed Abstract. Full Text.
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. Health Promot Pract. 2020;21(5):693-704. doi:10.1177/1524839920938704. PubMed Abstract.Full Text.
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. Health Promot Pract. 2020;21(5):705-715. doi:10.1177/1524839920936248. PubMed Abstract.Full Text.
Gerke DR, Glotfelty J, Schlueter J, Freshman M, Plax K. E-VOLUTION: A Text Messaging-Powered Intervention-Connection, Support, and HIV Eradication. Health Promot Pract. 2020;21(5):716-726. doi:10.1177/1524839920936242. PubMed Abstract.Full Text.
Medich M, Swendeman DT, Comulada WS, et al. 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 [published correction appears in JMIR Res Protoc. 2019 Sep 09;8(8):e15660]. JMIR Res Protoc. 2019;8(1):e10681. Published 2019 Jan 31. doi:10.2196/10681. PubMed Abstract.Full Text.
Reback CJ, Rünger D. Technology use to facilitate health care among young adult transgender women living with HIV. AIDS Care. 2020;32(6):785-792. doi:10.1080/09540121.2019.1653439. PubMed Abstract.Full Text.
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;8(7):e12837. Published 2019 Jul 29. doi:10.2196/12837. PubMed Abstract.Full Text.
Reback CJ, Fletcher JB, Kisler KA. Text Messaging Improves HIV Care Continuum Outcomes Among Young Adult Trans Women Living with HIV: Text Me, Girl! AIDS Behav. 2021 Sep;25(9):3011-3023. doi: 10.1007/s10461-021-03352-3. Epub 2021 Jun 24. PMID: 34164763. PubMed Abstract.
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. Published 2020 Jan 30. doi:10.2196/13495. PubMed Abstract.Full Text.
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. Health Promot Pract. 2020;21(5):744-754. doi:10.1177/1524839920936244. PubMed Abstract.Full Text.
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. Health Promot Pract. 2020;21(5):755-763. doi:10.1177/1524839920936241. PubMed Abstract.Full Text.
Tanner AE, Song EY, Mann-Jackson L, et al. 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;32(11):450-458. doi:10.1089/apc.2018.0060.PubMed Abstract.Full Text.
Tanner AE, Mann L, Song E, et al. weCARE: A Social Media-Based Intervention Designed to Increase HIV Care Linkage, Retention, and Health Outcomes for Racially and Ethnically Diverse Young MSM. AIDS Educ Prev. 2016;28(3):216-230. doi:10.1521/aeap.2016.28.3.216. PubMed Abstract.Full Text.
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 Uhealth. 2020;8(1):e16838. Published 2020 Jan 10. doi:10.2196/16838. PubMed Abstract.Full Text.
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 Uhealth. 2019;7(5):e13241. Published 2019 May 8. doi:10.2196/13241.PubMed Abstract.Full Text.
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. Health Promot Pract. 2020;21(5):727-737. doi:10.1177/1524839920936247. PubMed Abstract.Full Text.