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Can social media help prevent the spread of HIV?

Friday, 01 November 2013 Written by // CATIE - HIV and Hep C Info Resource Categories // Social Media, AIDS Walk for Life, CATIE, Research, Health, Sexual Health, Media, CATIE - HIV and Hep C Info Resource

In this review CATIE suggests that more researchers need to consider and evaluate engagement with electronic social networks and associated technologies (such as smartphones) to help people lead healthier lives.

Can social media help prevent the spread of HIV?

This article by Sean R. Hosein first appeared on the CATIE website here.

Une version française est disponible ici.

HIV and other sexually transmitted infections (STIs), including syphilis and gonorrhea, continue to spread in high-income countries such as Canada, Australia, the U.S. and in Western Europe, particularly among men who have sex with men (MSM).

A key part of prevention efforts is to offer HIV testing so that people can know their status and take steps to protect themselves and others. If they are negative, they can be counselled about safer sex and the need for regular screening for HIV and other STIs. If positive, they can receive counselling and swift referral for medical monitoring and discussion about the benefits of starting treatment for their personal health. Another benefit of treatment is that it reduces the amount of HIV in a person’s blood and genital fluids, thus reducing their sexual infectiousness.

Social networking

The popularity of electronic social networking sites and so-called smartphones has resulted in the growth of virtual communities that are ripe for communicating messages about healthier living, including HIV prevention. Such sites and technologies are used by some people to find sexual partners, therefore they are of growing importance for the encouragement of healthy behaviours.

Researchers at the University of California at Los Angeles (UCLA) conducted a study called HOPE—harnessing online peer education. They trained participants to deliver HIV prevention messages and related issues via the social networking site Facebook. The researchers found that participants who received such messages were more likely to request home-based HIV testing kits and get tested. Also, reductions in unsafe sexual behaviour occurred among some participants.

These results, which need to be confirmed in a larger, longer study, suggest that more researchers need to consider and evaluate engagement with electronic social networks and associated technologies (such as smartphones) to help people lead healthier lives.

Study details

Researchers recruited participants from Internet and social networking sites, including Facebook and Craigslist. A website for the study was also developed so that participants could tell potential volunteers about it.

As HIV infections in the U.S. are increasingly spreading among black and Latino MSM, the study team specifically sought to recruit these populations. Once 70% of participants enrolled were from those communities, the researchers opened recruitment to other ethno-racial groups.

Researchers randomly assigned 112 participants to receive one of the following in a number of groups:

  • intervention: education about ways to protect themselves from HIV and about HIV testing
  • control: general information about healthy living

Researchers also recruited 16 peer leaders from community organizations that serve black and Latino MSM. These men were described as being generally “friendly and well-respected…and were interested in educating others about health.” The peer leaders were randomly assigned to one of the two study groups. If assigned to the intervention group, they received education about HIV prevention and how to communicate such ideas. If assigned to the control group, they received training about “general health and ways of using Facebook to discuss health and stigmatizing topics.” Researchers tested the peer leaders after training sessions to ensure that they understood the ideas being communicated.

The research team used Facebook to create closed groups. They described the closed groups as “virtual communities that cannot be accessed or searched for by non-group members.”

Two closed groups were created on Facebook for participants to receive HIV information and two other closed groups, also on Facebook, were created for participants who were assigned to receive general health information. Each closed group had 28 members and four peer leaders.

According to the researchers, for 12 weeks from March through June 2011, peer leaders communicated with participants on Facebook “by sending messages, chats and wall posts.” In the intervention groups, topics included HIV prevention and testing. In the control groups, messages centred on healthy eating, exercising and what researchers called “maintaining a low-stress lifestyle.”

Once a month, participants in both groups were informed that they could request a free HIV test kit. Participants who received the kits were able to get counselling about testing. They were instructed to prick their finger to get a drop of blood that was placed on a special card that came with the kit. This blood card was then mailed (or, in the language of the study, “returned”) to a laboratory where it was analysed. Participants could call to get their test results and further counselling.

Participants also completed surveys about their sexual and other behaviours.

At the start of the study, participants disclosed information so that an average profile could be made (note that numbers do not add up to 100 because of rounding):

  • age – 30 years
  • race or ethnicity – 28% black, 60% Latino, 11% white, 2% Asian
  • sexual orientation – 76% gay, 19% bisexual, 5% “heterosexual or uncertain”
  • marital status – 83% single, 3% married, 9% partnered, 5% divorced
  • 92% had a computer at home


Engagement was generally good in all groups throughout the 12 weeks of the study.

More participants who received messages about HIV prevention and testing (44%) requested an HIV home-testing kit than participants who received general health messages (20%).

Researchers found that participants who received HIV prevention messages had fewer sexual partners over time than other participants.

Black participants reported a significantly decreased level of unprotected receptive anal intercourse. However, Latino participants did not report such a change.

Points to consider

  •  The HOPE study shows that it is possible to engage relatively young MSM about HIV prevention via social networking.
  •  Some participants were willing to accept the offer of HIV testing.
  • 93% of participants remained in the study until its end.
  • Changes in unsafe sexual behaviour were seen among one ethno-racial group.

For the future

The randomized controlled design of the HOPE study shows that young MSM can be recruited and engaged in studies that use social networking to help strengthen HIV prevention efforts. The study’s findings lay the foundation for a larger, more robust (and expensive) study on long-term engagement of young people in HIV prevention efforts. Such studies could consider exploring the use of multiple tools (such as smartphones, websites, chat rooms and so on) that are used for sexual networking by MSM. Ideally, such studies could assess changes in sexual behaviour and HIV status. They could also uncover the reasons for changes in unsafe behaviour that were seen in the present study in one ethno-racial group but not another.

For HIV-positive people, studies engaging virtual communities could help assess other interventions, such as the ability to connect with clinics and engagement in care, treatment and support.

New social networking technologies could also be used to help create healthier communities and reduce the spread of sexually transmitted infections, including HIV.                                                                                                                              


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3. Sabin C. Review of life expectancy in people with HIV in settings with optimal ART access: what we know and what we don’t. In: Program and abstracts of the 11th International Congress on Drug Therapy in HIV Infection, 11-15 November 2012, Glasgow, UK. Abstract O131.

4. May M, Gomples M, Sabin C, et al. Impact on life expectancy of late diagnosis and treatment of HIV-1 infected individuals: UK Collaborative HIV Cohort Study. In: Program and abstracts of the 11th International Congress on Drug Therapy in HIV Infection, 11-15 November 2012, Glasgow, UK. Abstract O133.

5. Lohse N, Hansen AB, Pedersen G, et al. Survival of persons with and without HIV infection in Denmark, 1995-2005. Annals of Internal Medicine. 2007 Jan 16;146(2):87-95.

6. Lohse N, Hansen AB, Gerstoft J, et al. Improved survival in HIV-infected persons: consequences and perspectives. Journal of Antimicrobial Chemotherapy. 2007 Sep;60(3):461-3.

7. Søgaard OS, Lohse N, Østergaard L, et al. Morbidity and risk of subsequent diagnosis of HIV: a population based case control study identifying indicator diseases for HIV infection. PLoS One. 2012;7(3):e32538.

8. Young SD, Szekeres G, Coates T. Sexual risk and HIV prevention behaviors among African-American and Latino MSM social networking users. International Journal of STD and AIDS. 2013; in press.

9. Coates TJ. An expanded behavioral paradigm for prevention and treatment of HIV-1 infection. Journal of Acquired Immune Deficiency Syndromes. 2013 Jul;63 Suppl 2:S179-82.

10. Young SD, Cumberland WG, Lee S-J, et al. Social networking technologies as an emerging tool for HIV prevention. Annals of Internal Medicine. 2013;159:318-324.

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