weCare was implemented by the Wake Forest University School of Medicine as part of the Ryan White HIV/AIDS Program (RWHAP) Part F Special Projects of National Significance (SPNS) initiative, Use of Social Media to Improve Engagement, Retention, and Health Outcomes along the HIV Care Continuum. In weCare, a cyber health educator sent personalized messages through text, web-based apps, and Facebook to enrolled youth who identified as gay, bisexual, or other men who have sex with men (MSM), or transgender women, and who either had a new diagnosis of HIV or were not in care at the time of enrollment. Messages were personalized to each participant’s needs and were designed to support them as they navigated complicated health care systems as well as other challenges that affect care engagement (e.g., transportation, disclosure). The cyber health educator also moderated and posted information about health and well-being on an optional secret Facebook page that some participants chose to join. Participants were less likely to miss medical appointments and more likely to be virally suppressed after 12 months of the intervention.
Winston-Salem and Greensboro, NC
In 2019, 21% of people newly diagnosed with HIV in the United States were youth (ages 13–24)1 with the vast majority male and Black or Hispanic/Latina(o/x). Youth are less likely to be virally suppressed and more likely to miss medical appointments and medication doses than people who are older.2 Risk behaviors, profound health inequities, limited resources, and managing complex health care systems can all negatively impact HIV care and outcomes.3 mHealth social media can serve as an important mechanism to encourage youth to engage in care, as 95% of teens have access to smartphones, and almost half reported they are online “almost constantly.”4 The vast majority of teens text for communication and use social media platforms to share and receive information, dominated by YouTube (95%), TikTok (67%), and Instagram (62%).5
The weCare intervention is delivered over 12 months by a cyber health educator who is trained on the intervention components, protocols, and the “nuts and bolts” of intervention delivery. The cyber health educator uses a combination of Facebook messenger, texting, and app-based instant messages, based on the participants’ preferences, to communicate with each participant individually using theory-based messages specific to each participant’s place on the HIV care continuum. The cyber health educator also manages an optional Facebook secret group for participants (see below).
The cyber health educator was based in the clinic where participants received care, and complemented, rather than supplanted, the existing roles and services of the staff (e.g., patient navigators, interpreters, etc.). The cyber health educator’s role was that of an additional resource within the clinic. In addition, the cyber health educator was trained to thoroughly understand the process of accessing HIV care clinical services within the clinic and understand the barriers faced by racially and ethnically diverse young MSM and young transgender women.
After initially meeting with each participant in person, the cyber health educator sent them personalized messages in English or Spanish, using each participant’s social media platform of preference (i.e., text, web-based apps, or Facebook). Message content (based on social cognitive theory and empowerment education theory) was tailored to meet participant needs and priorities and build strengths, depending on where they were on the HIV care continuum (e.g., out of care, virally suppressed). Social cognitive theory promotes skills building and self-efficacy through knowledge sharing, role-playing, and support for behavior changes. Empowerment education theory helps individuals think critically to problem solve and act. The cyber health educator also reminded participants of upcoming appointments, encouraged them to attend, and followed up if they missed their appointments.
Example message: Hi Jim, I heard u missed ur appointment today. Are u ok? Please call the clinic to reschedule at ###-###-####, let me know ☺
Moderated by the cyber health educator, a private Facebook group served as a platform for participants to obtain resources and information related to their diagnosis, and to learn from and support each other. The cyber health educator also shared data on engagement in HIV care and health outcomes to raise awareness. Only people enrolled in weCare could join the group, and participation was voluntary.
As part of empowerment education theory, “using app-based instant messaging, the cyber health educator might applaud a participant who reports getting an ART prescription after diagnosis, and also ask they how they plan to get the prescription filled.”
Ninety-one people between the ages of 16 and 34 who self-identified as gay, bisexual, or other MSM (men who have sex with men), or transgender women enrolled in the intervention. The evaluation compared key outcomes for these people during the 12 months before the intervention to the 12 months after enrollment.
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* statistically significant |
Source: 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 Pt Care STDs. 2018;32(11):450-458.
Community-based participatory research (CBPR). A team comprised of Wake Forest and community partners developed the intervention based on CBPR principles. A steering committee with members from the young gay, bisexual, and MSM, and transgender communities helped Wake Forest gain a better understanding of participant experiences. This committee also ensured that project activities and the evaluation approach were culturally congruent and aligned with participant values, needs, and priorities and built on community assets.
Relatable profiles. The cyber health educator created profiles for all communication platforms, using actual pictures of himself and updated periodically.
Appropriate workspace. The cyber health educator had an office at the clinic to recruit, meet, and communicate with participants. He also had a cell phone and tablet that supported the various communication platforms.
Recruitment. The steering committee developed a logo and recruitment materials with the support of Wake Forest. Recruitment materials were in both English and Spanish, posted at the clinic, and shared on social media, Craigslist, and an LGBTQ+-serving newspaper. The cyber health educator also introduced the program to eligible participants during HIV testing and care appointment visits. A few referrals came from community organizations and local health departments.
Training. The cyber health educator was trained in crafting messages informed by social cognitive theory and empowerment education theory, and how to lead interactive and role-play activities.
Intervention costs included compensation of the cyber health educator, other staff, and steering committee members, along with fees and equipment associated with all communication.
- Building social media strategies around platforms that participants already use (instead of requiring a new platform) reduced barriers and required fewer behavior changes to participate in the intervention.
- Participants appreciated connecting via text and social media for convenience and for the ability to access shared information later. At the same time, participants liked meeting the cyber health educator in person; they were able to get to know the person behind the messages.
- The cyber health educator built relationships with each participant, facilitating the development of personalized messages aligned with each participant’s values, priorities, and strengths.
- Participants may not have posted to online forums due to concerns with disclosure, but they still benefited from viewing the information shared by others.
- The cyber health educator should reflect the population on at least one of these characteristics: age, sexual orientation/gender identity, and/or race/ethnicity.
- CDC. HIV Information and Youth. Centers for Disease Control and Prevention.
- CDC. HIV by Age: Viral Suppression. Centers for Disease Control and Prevention.
- NIH. Adolescents and Young Adults with HIV.
- Anderson M, Jiang J. Teens, Social Media and Technology 2018. Pew Research Center: Internet, Science & Tech. Published May 31, 2018.
- Vogels E a, Gelles-Watnick R, Massarat N. Teens, Social Media and Technology 2022. Pew Research Center: Internet, Science & Tech. Published August 10, 2022.
