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 will implement and evaluate innovative social media methods to identify, link, and retain HIV positive, underserved, underinsured, hard-to-reach youth and young adults (ages 13-34) in HIV primary care and supportive services. These are system approaches utilizing a variety of social media, internet, and mobile-based technologies to improve engagement and retention in care, and viral suppression. Demonstration projects are expected to implement these models, evaluate their effectiveness, and to disseminate findings, best practices, and lessons learned.
Demonstration sites are also required to work 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 will focus on youth and young adults living with HIV who are aware of their HIV infection status, but have never been engaged in care, are aware but have refused referral to care, have dropped out of care, are infected with HIV but are unaware of their HIV status, or have not achieved viral suppression.
Grants for this initiative were awarded to the organizations listed below, and the following describes each recipient's social media model. Funding is anticipated for four years.
Coastal Bend Wellness Foundation Inc., Project WELLNESS WEB 2.0, Corpus Christi, TX
The Coastal Bend Wellness Foundation (CBWF) serves 12 counties within the Texas Public Health Region 11, where youth and young adults (ages 13-34) account for 57% of all new HIV diagnosis, and, within that age group, African Americans and Hispanics account for 79% of all new HIV infections in the state. CBWF will develop, implement, evaluate, and disseminate an innovative, internet-based model to increase HIV status awareness, engagement and retention into care, and achievement of viral suppression among youth and young adults who are hard to reach through traditional methods. Project WELLNESS WEB 2.0 will enhance CBWF's current social media strategy to include sustainable access and retention media platforms specifically targeting underserved and out-of-care, primarily minority, youth and young adults. The project will adapt the ARTAS EBI for implementation via social media platforms aimed at engaging recently diagnosed youth into HIV care.
Friends Research Institute, Inc., Text Messaging to Improve Linkage, Retention and Health Outcomes among HIV-positive Young Transgender Women, Los Angeles, CA
Young transgender women (aged 18-34) experience a number of structural and psychosocial challenges including discrimination, prejudice, stigmatization, and social/economic marginalization, all of which pose significant obstacles to linkage to and retention in HIV primary care, and ART medication adherence. Due to these challenges and their often transient nature, a text-messaging HIV intervention poses a particularly promising method to improve their health outcomes along the HIV Care Continuum. Over the course of the 90-day intervention, participants will receive 270 theory-based text messages that are targeted, tailored, and personalized specifically for HIV-positive young transwomen. Participants will receive three messages per day in real-time within a 10-hour graduated and automated delivery system. Following the 90-day theory-based, trans-specific text-messaging intervention, participants may opt in or out of continued weekly post-intervention messages for ongoing retention and engagement support derived from the HRSA-funded UCARE4LIFE library. Text messaging presents an ideal communication platform for engaging and retaining young trans women in HIV care, since it is easily accessible, culturally competent, private, portable and inexpensive, and, unlike Internet-/HTML-based social media platforms, it is used daily by even the most impacted transwomen.
Health Research, Inc., New York State Department of Health, Y Get It?: Using Social Media to Do What You Need to Do, Menands, NY
The Y Get It? Project is comprised of a mobile application developed in collaboration with Mt. Sinai App Lab and Peer Engagement and Educator Professionals (PEEPs) placed at two engagement hubs, Montefiore AIDS Center, and Long Island Crisis Center. The primary aims of the Y Get It? Project are to facilitate the timely entry of young people aged 18-34 into HIV care, to prevent vulnerable youth from dropping out of care, and to achieve sustained viral suppression among those in care. The Y Get It? mobile app component will utilize an Instagram serial featuring compelling stories and imagery that will be inspired by the personal stories of young people and active peer-to-peer communication to ensure continued engagement. In addition to the mobile app, the PEEPs will provide virtual support via the app and in-person support as needed. Application analytics will be collected and evaluated by Hunter College-School of Public Health Evaluation Center to assess the effectiveness and strengths of this novel social media project, which has the potential to advance health equity and reduce HIV-related health disparities along every stage of the HIV Care Continuum.
Howard Brown Health Center, Healthvana, Chicago, IL
The Howard Brown Health Center (HBHC) Healthvana social media intervention is an innovative integration of smart phone technology and social media into the HIV care continuum. Through the use of a downloadable smart phone app or web portal, this social media intervention will engage young men who have sex with men (YMSM) and transwomen of color aged 13 to 34 who are patients at HBHC. The intervention will target those within these populations who are aware of their HIV infection status, but have not been engaged in care, are aware of their HIV status but have previously refused care, have dropped out of care; are infected with HIV but are unaware of their status, and have not achieved viral suppression.
The Metro Health System, Positive Peers Application (PPA), Cleveland, OH
MetroHealth (MHS) HIV Clinic's intervention will create a web-based mobile operating system application for youth and young people aged 13-34 living with HIV. The Positive Peers Application (PPA) will feature information, social networking, and self-management tools to support HIV-related holistic care. PPA will be made available to the young adult HIV population in Cuyahoga County as a gatekeeper application, accessible only through a confidential registration process. The project will develop application architecture, content and tools for the Positive Peers application, which will support and improve retention in care and clinical outcomes for our young patients living with HIV. MHS will also evaluate the associations of user engagement and activation with self-management behavior, perceptions of stigma, and retention in HIV care.
Pennsylvania State University, OPT-In For Life, Hershey, PA
Penn State University's intervention will link all collaborative partners to their OPT-In For Life application, which will connect to their website and social media sites. The OPT-In brand will promote healthy living, provide culturally appropriate and regionally-based HIV education to youth and young adults, and encourage users to know their status and seek care with other PSU programs. The intervention will also create banner ads on existing social media sites and on popular dating apps that serve the region, such as Adam4Adam and Grindr, promoting HIV testing at free local testing sites in collaboration with the Pennsylvania Department of Health (PADOH). PADOH may also provide testing incentives redeemable online at local merchants for people who utilize OPT-In For Life banner ads to locate a testing site. The intervention will also actively promote 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 will utilize 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.
Philadelphia FIGHT, Positively Connected for Health (PC4H), Philadelphia, PA
Philadelphia FIGHT, in collaboration with Children's Hospital of Philadelphia's Adolescent HIV Initiative, will implement an innovative, comprehensive social media intervention to reach youth under 30 across the HIV Care Continuum. PC4H is structured to reach youth through three distinct yet coordinated social media approaches, including the iknowUshould2 platform, the Positively SmART mobile application (app), and APPlify Your Health. Workshops will engage youth in small groups using pop-up iPad labs and sample mobile devices, allowing them to become familiar with the various functions of the Positively SmART app, iknowushould2 website features, and other social media related to their health, which can be customized to their needs. The goals of the project are to increase awareness of HIV status among high-risk youth; increase linkage to care among newly diagnosed and out of care HIV-positive youth, and increase adherence and reduce viral load among HIV-positive youth through these three coordinated social media methods.
Public Health Foundation Enterprises, Inc., San Francisco Department of Public Health, Digital Navigation Services, City of Industry, CA
The San Francisco Department of Public Health (SFDPH) will develop an innovative model of HIV care using digital and social media technologies to improve access to and retention in high quality HIV care. SFDPH seeks to bridge service gaps in the identification of newly diagnosed youth and young adults, and those who have fallen out-of-care, with an emphasis on young MSM and young transwomen. This project will implement digital navigation services that encompass a variety of text, mobile app, and social network platforms to meet patients where they are. The project will create a digital and social media safety net to identify, engage, and retain youth and young adults living with HIV in San Francisco. An integrated social media dashboard for the Digital Navigator to geo-locate, identify, and communicate with newly diagnosed and out-of-care youth and young adults living with HIV across mainstream social media platforms, including but not limited to Facebook, Twitter, YouTube, Tumblr, kik, Snapchat, and Instagram. The Digital Navigation model will close gaps in linkage and enrollment into HIV care and address the decline in retention in care and low viral suppression rates among young people living with HIV in San Francisco.
Wake Forest University, Tailored Use of Social Media to Improve Engagement and Retention in Care and Health Outcomes for MSM with HIV, Winston-Salem, NC
Wake Forest University will develop, implement, evaluate, and disseminate findings from an innovative, tailored intervention designed to increase HIV testing and to improve linkage, retention and health outcomes among underserved, underinsured, and hard-to-reach, racially and ethnically diverse MSM, aged 16-34 living with HIV. The intervention harnesses established social media commonly used by young MSM, including Facebook, text messaging, and established GPS-based mobile applications. The project will use a community-based participatory research (CBPR) approach, equitably involving community members, organization representatives, health care providers, clinic staff, and academic researchers in all phases. The project seeks to advance the overall understanding of the use of social media to increase HIV testing and improve linkage to and retention in care and health outcomes among racially and ethnically diverse young MSM living with HIV.
The Washington University, Project ARK, Saint Louis, MO
Project ARK (AIDS/HIV Resources and Knowledge) is an HIV care and prevention program of the Washington University School of Medicine. The intervention will use 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. It will expand staff's skills and capacity to use texting to send appointment reminders and other communications to improved client linkage, retention/engagement, and promote medication adherence. Short educational videos and animated clips averaging two-minutes in length will be developed to support youth linkage and retention in care, to enhance client skills building, and to address HIV-related stigma in the community. YouTube videos and animations will be designed to reduce anxiety around attending first appointments for clients new to the care environment, to increase the acceptability of referrals for retention-related wraparound services like mental health and peer treatment adherence counseling, and to teach skills aimed at increasing the ability of youth to independently maintain consistent involvement in HIV medical care. Project ARK will incorporate these videos into service delivery and build on its current use of social networks to promote an anti-stigma campaign.
University of California at Los Angeles, Evaluation and Technical Assistance Center (ETAC)
The University of California at Los Angeles (UCLA) serves as the Evaluation and Technical Assistance Center (ETAC) for this initiative. The ETAC will coordinate the multi-site evaluation, provide programmatic technical assistance to the demonstration sites, and lead the publication and dissemination of findings, best practices and lessons learned. UCLA will provide leadership and support to demonstration sites implementing social media initiatives to improve health outcomes along the HIV care continuum. UCLA will work with the SPNS Program to support the 10 demonstration sites in the development, implementation, and evaluation of their social media interventions.
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, June 2016; 28 (3): 216-30. PubMed Abstract