Tweeting, Posting, Liking: Social Media and the Message About HIV

Organizations from the Centers for Disease Control and Prevention (CDC) to the World Health Organization are looking for ways to engage adults and teenagers online in discussions about HIV prevention, testing, and treatment.

In 2011, 81% of adults and 95% of teenagers in the US were online, with an estimated 80% of teens and 48% of adults using social networking sites like Facebook, Twitter, and You Tube. About a third of teens and 10% of adults looked online for health information, while 17% of teens said they searched for information about health topics that are “hard to talk about,” such as sexual health and drug use.1

So it makes sense that organizations from the Centers for Disease Control and Prevention (CDC) to the World Health Organization are looking for ways to engage adults and teenagers online in discussions about HIV prevention, testing, and treatment. The CDC’s director, Tom Frieden MD, even held a live Twitter chat in December about HIV in youth (his Twitter handle is @DrFriedenCDC).

“In social media you can see information without having to engage in it, you can lurk,” said Ben Carter, communications specialist at the the National Minority AIDS Council (NMAC). The Council offers educational and training materials on using social media in the HIV/AIDS arena.

“The hope from our perspective and any other organization working on social media is that the people who need the information are lurking and we hope our outreach is making an impact,“ he said.

Indeed, much of the social media and mobile efforts of HIV-related organizations amounts to “shouting into the wind” and hoping someone hears you, Carter said. Nonetheless, he does think someone is listening. In the past year, the number of “likes” on the Council’s Facebook page has more than doubled, from 700 in 2011 to 1800 in 2012; its You Tube channel has had more than 80,000 views; and it has more than 4,400 Twitter followers.

Mobile technology is viewed as a vital component in HIV prevention in the developing world in particular, given that there are 500 million cell phones in Africa alone.2 One such program is the free mobile phone platform Young Africa Live, where young people in South Africa can gather to talk and learn about issues such as love, sex, and HIV. It reaches more than 30 million South Africans a month and between its launch in December 2009 and the end of 2012, had received more than 78 million total page views, more than 2.7 million total comments, and more than 1.3 million unique visitors. To promote HIV testing, it provides links to voluntary counseling and testing centers.

The opportunity to reach individuals with HIV-related information online is significant. One study surveyed 312 HIV-infected individuals and conducted focus groups with 22 about their use of social media and mobile technologies. Three-fourths of those with the lowest adherence to anti-retroviral therapy (ART) used social networks at least once a week, 81% texted extensively, and half accessed the Web via their mobile phone or tablet. Ideally, participants told researchers, they would prefer networks that facilitated socializing with others and had relevant HIV information. They also warned that privacy issues could be a barrier.3

Online portals, social media and mobile-based apps have the potential to reach many more people with HIV-prevention and treatment messages; the real question is whether these approaches are effective.

The short answer is that it is too early to tell. The explosion in mobile applications and social networking is still relatively young, so the research, too, is young.

However, a recently published systematic review of the use of digital media, including text messaging and social networks to engage youth in sexual health promotion and risk reduction, found that such interventions could have a significantly positive effect. Of 10 studies evaluated, seven of which were conducted in the United States, two significantly delayed sexual initiation and six studies showed increased knowledge of HIV, sexually transmitted infections or pregnancy in participants.4
One study used an interactive web-based program with role-model stories matched to participants’ gender and race/ethnicity to improve the use of condoms.  Participants in the Internet-based intervention (n=991) demonstrated a small but significant improvement in condom use, while those who received the intervention in a clinic-based setting (n=574) did not.5

Another study evaluated the impact of the social networking site My Space on 190 participants ages 18-20 who had at least three sexual references on their profile. Those who received just one email from a female physician with a link to sexually transmitted infection testing information regarding the risk of publically disclosing sex/substance behaviors testing were four times more likely to remove references to sex from their profiles than were members of a control group.6

Even a chat room intervention can lead to higher rates of HIV testing.7

Studies also find that social networks facilitated by peer leaders provide a good opportunity to engage homeless youth, who have high rates of HIV.8 Surprisingly, 95% of homeless youth use the Internet at least once a week, with more than 80% using social networking web sites.9 One study found that within nine weeks of starting an outreach program, peer counselors recruited 52 in-person homeless youth to create digital media projects around HIV prevention, who then recruited another 103 youth to participate online in the program.8

The University of California-Los Angeles “Harnessing Online Peer Education (HOPE)” study is evaluating the use of social media for peer-led HIV prevention, particularly among African-American and Latino men who have sex with men. The program is still in its infancy, but already has developed an online peer education training curriculum to train peer leaders to deliver culturally aware HIV prevention messages using social media. The training addresses ethical issues as well as more clinical information.10

Early results from the program in which eight peer leaders moderated a Facebook group (n=57) for 12 weeks found an increase in discussions about prevention, testing, and stigma as the program progressed. "Social networking can be an effective forum to discuss HIV/AIDS," the leaders concluded, "and is associated with health promoting behaviors such as HIV testing among at-risk groups.”11

Community providers can implement their own social media approaches to reach out to current and potential patients, said Carter. Among the relatively simple options:
•    A Facebook page with links to current information about HIV prevention, testing, and treatment
•    Tweets about relevant information
•    A patient portal that provides a secure chat room
•    Regular blogs about HIV-related issues
•    You Tube videos of HIV experts or even HIV-infected individuals

Whatever you do, he said, make sure you make it as interesting and “fun” as possible. Rather than just providing a link to information, provide some context around that link.

And don’t worry if your “shouts” into the wind appear to go unheard. “The goal is to grow your ‘likes’ and followers and if they find you of some value, to share you with their followers,” Carter added. “That’s the Holy Grail.”



1. Pew Internet and American Life Project. Trend Data (Teens). 2011; Accessed January 14, 2013.

2. UNAIDS. Preventing HIV with Social Media and Mobile Phones. May 2, 2011; Accessed January 14, 2013.

3. Horvath KJ, Danilenko GP, Williams ML, et al. Technology use and reasons to participate in social networking health websites among people living with HIV in the US. AIDS Behav. 2012;16(4):900-910.

4. Guse K, Levine D, Martins S, et al. Interventions using new digital media to improve adolescent sexual health: a systematic review. J. Adolesc. Health. 2012;51(6):535-543.

5. Bull S, Pratte K, Whitesell N, Rietmeijer C, McFarlane M. Effects of an Internet-based intervention for HIV prevention: the Youthnet trials. AIDS Behav. 2009;13(3):474-487.

6. Moreno MA, Vanderstoep A, Parks MR, Zimmerman FJ, Kurth A, Christakis DA. Reducing at-risk adolescents' display of risk behavior on a social networking web site: a randomized controlled pilot intervention trial. Arch. Pediatr. Adolesc. Med. 2009;163(1):35-41.

7. Rhodes SD, Vissman AT, Stowers J, et al. A CBPR partnership increases HIV testing among men who have sex with men (MSM): outcome findings from a pilot test of the CyBER/testing internet intervention. Health Educ. Behav. 2011;38(3):311-320.

8. Rice E, Tulbert E, Cederbaum J, Barman Adhikari A, Milburn NG. Mobilizing homeless youth for HIV prevention: a social network analysis of the acceptability of a face-to-face and online social networking intervention. Health Educ. Res. 2012;27(2):226-236.

9. Rice E, Monro W, Barman-Adhikari A, Young SD. Internet use, social networking, and HIV/AIDS risk for homeless adolescents. J. Adolesc. Health. 2010;47(6):610-613.

10. Jaganath D, Gill HK, Cohen AC, Young SD. Harnessing Online Peer Education (HOPE): integrating C-POL and social media to train peer leaders in HIV prevention. AIDS Care. 2012;24(5):593-600.

11. Jaganath D, et al. HIV/AIDS Prevention with Social Media: A Mixed Methods Analysis of the Harnessing Online Peer Education (HOPE) Study Paper presented at: American Public Health Association Annual Meeting & Expo2012; San Francisco, CA.

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