Use of social media to improve engagement in care and health outcomes for young MSM and transgender women with HIV - FINAL ALL-RECIPIENTS MEETING
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Use of social media to improve engagement in
care and health outcomes for young MSM and
transgender women with HIV
FINAL ALL-RECIPIENTS MEETING
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
Current status
Characteristics, self-id n (%)
• N=198 (goal was 192) Race
• Mean age=26 American Indian/AK Native 2 (1.0)
• Intervention-control (usual care) Asian 3 (1.5)
Black/African American 136 (68.7)
group design White 31 (15.7)
• Randomized: Multiracial 23 (11.6)
• Intervention, n=100 Other 3 (1.5)
• Usual care, n=98 Ethnicity
Latinx 25 (12.6)
Gender identity
• 6-month follow-up: Cisgender male 186 (93.9)
• n=181; I=89, UC=92 Transgender 10 (5.1)
• 12-month follow-up: Other 2 (1.0)
Sexual orientation
• n=162; I=79, UC=83 Straight 6 (3.0)
• 18-month follow: Gay 147 (74.2)
• n=123; I=61, UC=62 Bisexual 37 (18.7)
Other 8 (4.0)
Implementation All participants graduated as of 06/12/19!
Implementation
• Topics covered
• Check-ins
• Appointment reminders
• Missed appointments
• Prescription/adherence reminders
• Problem-solving/overcoming barriers
• Other information/help
• E.g., referrals to other agencies
• Greetings, celebrations… to build
social support
• Personalized to the participant!
Implementation lessons learned • Not everyone has a job so must be careful about holidays, weekends • Some may also work on holidays/weekends • Match language to how participant speaks • Secret Facebook group: Participants read but don’t necessarily interact • Don’t want to bring attention to themselves because of stigma • Potential ideas: anonymous FB acct (already familiar), GroupMe
Retention rates: Intervention only
6m FU Frequency Percent
Completed 89/99* 90%
All passed window
12m FU Frequency Percent
Completed 79/83 95%
Not passed window yet = 10
18m FU Frequency Percent
Completed 61/68 90%
Not passed window yet = 25
*1 deceased participant.
For retention rate, the ETAC is using the following formula:
Numerator: number of participants who have completed follow-up surveys
Denominator: number of participants who have completed follow-up surveys +
number of participants who are passed the window period (Actual footage of Jorge
speeding to meet a participant)
Retention tricks & lessons learned • Use the social media platform that each participant prefers • Use the media they used most recently with us, before trying other preferred platforms • We review social media preferences at follow-up
Retention tricks & lessons learned
• Authentic involvement of the steering committee
• Recruitment and enrollment
• Messaging
• Increased relevance
• Serve as a guide for “natural” communication
• Linked to both theory and HIV care continuum
• Retention
• Friendly messaging
• Not only about engagement in care
• Recognizing birthdays and holidays
• Celebrating successes: Graduation, new job, new boyfriend
• Support through crises: Boyfriend breakups, loss of housing
• “Being a friend” through these platforms
Retention tricks & lessons learned • Messages often conclude with a question • Allows us to know whether message reached participant • Promotes 2-way communication • Not every participant “needs” same amount of support/help • Targeted, tailored, & personalized!
Retention tricks & lessons learned
• We know no limits
• Not answering intervention messages?
• We use different social media platforms
• We go to where the participant might be found (e.g., the clinic)
• What can WakeOne/EPIC tell us?
• Check with clinic staff, DIS
• Not answering messages for follow-up?
• Switch phones (as many times as necessary) so the number isn’t
recognizable
• We do not provide much info until participant is too curious not to
respond
• Accommodate participant schedules and sudden change of plans
in terms of timing and location for completing follow-ups
• Data collection in very convenient locations chosen by participant: clinic,
home, fast food restaurant, office/lobby, car…Retention tricks & lessons learned
In-depth interviews
• In-depth qualitative interviews with participants and healthcare providers
(including physicians, PAs, nurses, social workers, patient navigators, and
bridge counselors), and cyber health educators
• Interview guides were developed and approved by the weCare steering
committee
• Interviews are recorded and transcribed
• A common coding system was developed for analysis using constant
comparisonPreliminary and emerging themes
• Voice communication (via phones) is less common for young
MSM and transgender women of color compared to social
media
• Immediate communication
• When a participant misses an appointment; intervene
• Shows that someone is paying attention
• Phone access and numbers change; social media access is
constant
• Social media text is available for future reference compared to
information provided by voice (phone)
• Delicate balance: how often to message/check-in
• Future: Instagram direct messaging is a potential
• Healthcare providers have limited communication outside of
callsThe Role of Cyber Health Educators • Critical to meet each participant once in person, followed by social media communication • Build trust • Viewed positively as social support for and advocates of participants • Develop relationships through social media • “A friend in the clinic” • Viewed as well integrated into the clinic and as liaisons to providers and clinic staff; EPIC access is important • Empower participants through skills building • More sustainable • Perceived as more useful for participants than automated messaging • Bridge the gap between appointments and serve as connection to additional services (e.g., HMAP renewal and dental care) • Must reflect participant demographics in several ways (sexual orientation, gender identity, language, race/ethnicity, and/or age)
Secret Facebook Group • Source of information • Sense of some social support from group members • Room for improvement and enhancing utility as a virtual support group Clinic Partnership • Clinic buy-in and participation are key • Effective communication between cyber health educators and providers/clinic staff
Identified barriers to viral suppression Specific to engagement in care • Transportation: Poor public transit, lack of support for rides • Communication: Changing numbers and limited number of minutes on pre-paid phones, language barriers for Spanish speakers at clinics • Employment: Getting time off work, permission to leave while maintaining privacy • Stigma: Privacy concerns, fear of being recognized at the clinic • Health literacy: Limited educational attainment, lack of access to reliable HIV information
Identified barriers to viral suppression Specific to medication adherence • Unstable housing: Difficult to store medications in one place • Stigma: Hiding HIV from others, medication serves as a reminder of diagnosis • Mistrust: Of healthcare providers and of medications • Physical: Anticipation of and experienced drug side effects • Financial: Lapses in coverage (e.g., HMAP renewal period), expensive copays • Chronic illness management skills: Forget to take, lose medications, trouble managing multiple pill times and conditions
Identified barriers to viral suppression
Other barriers to viral suppression
• Overarching: Mental illness, substance use,
interpersonal violence, lack of social support/isolation
• Barriers related to self and identity:
• For young people: sense of invincibility or playing the odds; trouble
looking ahead; seeing the benefit of treatment and not taking HIV
seriously; group living (dorms); and living with parents
• For MSM: Stigma and intolerance in the Southeast; provider
notions of norms and stereotypes
• For transgender women: Stigma and transphobia in healthcare
settings
• Survival sex
• Competing priorities: transition and HIVSustainability • Will require policy change at WFBH • After we have study findings, we will present to clinic, strategize, and present institutional leadership • We have clinic director’s support • Cone Health Foundation has funded a 3-year project to further implement at Regional Center for Infectious Disease, started October 1, 2018
Dissemination
Intervention manual/monograph development: Ongoing
Presentations
1) Rhodes SD, Tanner AE, Mann-Jackson L, Horridge D, Song EY, Alonzo J, Schafer K, Bell J, Garcia M, Ware S, Hall EA.
Using social media to support HIV care continuum outcomes for young MSM and transgender women: Preliminary
participant and provider perceptions. Adherence 2019. Miami, FL, June 16-19, 2019.
2) Mann-Jackson L, Tanner AE, Song EY, Alonzo J, Schafer KR, Arellano Hall E, Garcia J, Bell J, Rhodes SD. weCare: Use of
social media to improve health outcomes for MSM and transgender women living with HIV. Office of Global Health Dean’s
Research Symposium. Wake Forest School of Medicine, March 18, 2019.
3) Horridge D, Mann-Jackson L, Tanner AE, Song EY, Alonzo J, Garcia M, Arellano Hall E, Bell J, Rhodes SD. weCare:
Harnessing social media to increase care engagement and improve health outcomes for racially and ethnically diverse
young trans women and MSM with HIV. Southern Trans Health and Wellness Conference. March 7-9, 2019, Winston-Salem,
NC
4) Rhodes SD. Reducing HIV risk and developing communities through authentic approaches to community-engaged research:
Successes, challenges, and next steps. Center for Drug Use and HIV Research (CDUHR). New York University. February
12, 2019, New York, NY.
5) Alonzo J, Bell JC, Tanner AE, Song EY, Mann-Jackson L, Schafer K, Ware A, Garcia JM, Arellano Hall E, Wellendorf T,
Rhodes SD. Using social media to improve HIV care engagement and viral suppression among young MSM and
transgender women. National Ryan White Conference. December 11-14, 2018. Washington, DC.
6) Tanner AE, Song EY, Mann-Jackson L, Alnozo J, Schafer K, Arellano Hall E, Garcia M, Bell J, Rhodes SD. Translating
theory into social medi rrpactice through the weCare intervention to promote health for young MSM and transgender omen
with HIV. American Public Health Association. November 10-14, 2018. San Diego, CA.
7) Rhodes SD, Mann L, Alonzo J, Tanner AE, Song EY, Schafer K, Garcia JM, Arellano Hall E, Rhodes SD. Using social media
to improve HIV care linkage, retention, and health outcomes among young MSM and transgender women. The National
Ryan White Conference. August 23-26, 2016. Washington, DC.Dissemination: Papers and chapters
1) 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;32(11):450-458.
2) Tanner AE, Mann L. Song E, Alonzo J, Schafer K, Arellano JE, 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;28(3):216-230.
Also include information about weCare:
3) Rhodes SD, Tanner AE, Mann-Jackson L, Alonzo J, Horridge DN, Van Dam CN, Trent S, Bell J, Simán
FM, Vissman AT, Nall J, Andrade M. Community-engaged research as an approach to expedite
advances in HIV prevention, care, and treatment: A call to action. AIDS Education and Prevention.
2018;30(3):241-251.
4) Rhodes SD, Tanner AE, Mann-Jackson L, Alonzo J, Simán FM, Song EY, Bell J, Irby MB, Vissman AT,
Aronson RE. Promoting community and population health in public health and medicine: A stepwise
guide to initiating and conducting community-engaged research. Journal of Health Disparities Research
and Practice. 2018;11(3):16-31.
5) Rhodes SD, Mann L, Siman FM, Alonzo J, Vissman AT, Nall J, Tanner AE. ENGAGED for CHANGE: An
innovative community-based participatory research strategy to intervention development. In: Wallerstein
N, Duran B, Oetzel J, Minkler M (Eds.) Community-Based Participatory Research for Health. Ed. 3. San
Francisco, CA: Jossey-Bass. 2018:189-202.
6) Rhodes SD, Mann-Jackson L. Alonzo J, Simán FM, Vissman AT, Nall J, Abraham C, Aronson RE,
Tanner AE. ENGAGED for CHANGE: A community-engaged process for developing interventions to
reduce health disparities. AIDS Education and Prevention. 2017;29(6):491-502.Events
Discussion Scott D. Rhodes: srhodes@wakehealth.edu Jorge Alonzo: jalonzo@wakehealth.edu Jonathan Bell: jcbell@wakehealth.edu Lilli Mann-Jackson: lmann@wakehealth.edu Katherine R. Schafer: kschafer@wakehealth.edu Eunyoung Song: esong@wakehealth.edu Amanda E. Tanner: aetanner@uncg.edu
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