Use of social media to improve engagement in care and health outcomes for young MSM and transgender women with HIV

Our intervention weCare harnesses established social media platforms that MSM and transgender women between the ages 16-34 commonly use, including Texting GPS-based mobile applications (“apps”) A4A/Radar, badoo, Grindr, Jack’d, & SCRUFF Facebook Our intervention will use Facebook text messaging GPS-based mobile apps that MSM often use for social and sexual networking (“hookup apps”) In the bottom of this slide are the logos of popular apps that we are planning to use: Jack’d, badoo, Scruff, Grindr, and Adam 4 Adam Radar Focus on using the social media platforms that these communities are already using, rather than reinventing the wheel

Targeted! Tailored! & Personalized! Intervention is targeted for diverse young MSM and transgender women with HIV The intervention is tailored by social media use/preferences The intervention is personalized to each participant’s needs Implemented by a Cyber Health Educator (CHE): Eli Hall (married 12/2016!) Antwine Jenkins

Recruitment Started recruitment on September 26, 2016. Current: N=85 (goal=192); I=41; UC=42 2 haven't been randomized yet Needed to recruit 17/month through 08/2017 for an 18-month follow-up Revised to11/month through 2/2018 for 12-month follow-up Mean age=26; range: 18-34 Latino=20% African American/black = 60% White=15% Multi-racial=21% Other=4%

Recruitment successes Overall, we have had very few refusals from eligible and potential participants Cooperation of clinic staff and providers Being seen as part of/integrated into the clinic Being available nearly every day, whenever needed Having very quiet and comfortable space to explain the project to potential participants Explaining the project as simply as possible Being friendly and not imposing/requiring Being personable (smiling, greeting participants using first names, and thanking participants for considering)

Recruitment challenges Community partners (testing sites, health departments, and DIS) are eager to meet and collaborate But follow through is low (competing demands) Good-hearted people but prejudices still exist in communities African American/black and Latino MSM, transgender women, apps for social and sexual networking, immigration Closure of a local ASO Potential participants may feel healthy = no perceived need for help (despite need)

Strategies to overcome challenges Clinic discussions About ways we can support efforts to get new patients and those not yet enrolled in the study to initiate recruitment Increased coordination with STD clinic at local health department Meetings with DIS In our catchment area they provide most results New collaboration with Piedmont Health Services and Sickle Cell Agency Craigslist advertisements (under IRB review)

Implementation Steering committee continues to meet (Currently quarterly) Provide strategies for recruitment; created/refined social media messages Recruiting younger members for steering committee Continue to work with partners Continue to implement the social media intervention 381 conversations, highlights: Regular check-in = 40% Appt reminders = 26% Helping to re/schedule appts = 20% Acknowledgement of attending appts/care = 12% Problem solving/overcoming barriers = 7% Social support = 5% Following-up on previous conversation = 4% Medication adherence = 2% Facebook secret group posts/Existing content

Implementation successes Table of theory-based messages is useful for CHEs (and for team) A real face/person behind social media messages Personalized messages are critical Multiplatform approach is valuable Reflects tech-savvy youth and gives them “control” Facebook provides insights into participants’ lives that CHEs can use Rapid response by CHEs Clinic staff/schedulers and case managers are not as fast, efficient, caring… or do not have the ability/approval to use social media (hence, the importance of this demonstration project!)

Implementation challenges and strategies to overcome them Participants change phone numbers/phones are disconnected Participants do not reply to/answer social media messages Collecting more contact info at follow-up data collection (trust has been built) Being present at a clinic appointment to “find” a participant, working with pt. navigators to locate a participant, problem-solving as a team to strategize locating a participant, harnessing DIS to locate a lost participant Participants become incarcerated Wait until reentry Participants move to another state/out of country Try our best to retain “All participants need us!” Randomization isn’t so cool. (Affects relationship building with community organizations too.) Remembering the power of rigorous and strong evidence! Usual care is pretty good, actually.

Retention N=29 No one has been lost to follow-up (operationalized as outside of the follow-up window period) However, ready to implement retention strategies, such as: Collecting more contact info at follow-up data collection (trust has been built) Being present at a clinic appointment to “find” a participant, working with pt. navigators to locate a participant, problem-solving as a team to strategize locating a participant, harnessing DIS to locate a lost participant Among those who become incarcerated, waiting until reentry Among those who move to another state/out of country, try our best to retain

Discussion Jorge Alonzo: jalonzo@wakehealth.edu Rita Groce: rgroce@wakehealth.edu Eli Hall: jarellan@wakehealth.edu Antwine Jenkins: adjenkin@wakehealth.edu Lilli Mann: lmann@wakehealth.edu Scott D. Rhodes: srhodes@wakehealth.edu Katherine R. Schafer: kschafer@wakehealth.edu Eunyoung Song: esong@wakehealth.edu Amanda Tanner: aetanner@uncg.edu