“It Takes a Village”: Facebook and HIV

By Jason Chiu and Derek Hernandez

What is Facebook? According to my mother, “it’s a giant online community”. While brutally simple, that is indeed what Facebook is. Facebook is a platform that allows us to connect with others through shared interests, backgrounds, activities, and real-life connections. The number of Facebook users is increasing as we speak, and millions of messages, videos, photos, and comments are exchanged every day. Facebook transcends traditional boundaries (i.e. cultural, social or geographical), and brings us closer – data revealed that individuals from stigmatized communities are increasingly using Facebook and other social networking technologies to connect with others. For example, a quick Facebook public group search for HIV-positive (HIV (+)) yielded 60+ groups, ranging from “Ethiopia HIV-Positive Singles” to my personal favorite, “HIV-positive sex workers are fabulous”. Studies further suggested that seeking social support or information online might improve the health of HIV (+) individuals – they were more likely to adhere to their medications and to have undetectable viral load.

Using the ability of Facebook to rapidly establish online communities, we, researchers at CBAM and the newly established Center for Digital Behavior (CDB), began the Harnessing Online Peer Education (HOPE) Retention in Care study using Facebook to make sure HIV (+) African American and Latino men who have sex with men (MSM) are engaged in HIV care. HIV (+) African American and Latino MSM peer educators were recruited and trained to deliver HIV care-related information over Facebook private group to the participants. The Peer educators are HIV (+) African American and Latino MSM who have successfully controlled their viral load and are willing and comfortable talking the participants about HIV. Through our HOPE Retention in Care experience, we have come up with a few ethical suggestions for using Facebook to work with HIV (+) individuals:

1. Cultural sensitivity: HIV (+) African American and Latino MSM are often the victims of multiple forms of discrimination, including HIV/AIDS stigma, homophobia, racism, xenophobia, and poverty. Therefore, the project and its staff must be sensitive towards these cultural and social needs.

a. The use of peer educators: When my annoying English teacher recommended the book Brave New World to the class, I laughed it off and did not give it a second thought. However, when a friend handed me the exact same book a month after and told me that it was her favorite book, I immediately began reading. Peer education works exactly the same way; because the participants were able to relate to the peer educators, the participants were more likely to absorb and to practice the advice and information from the peer educators.

2. Informed consent: Most people do not read online informed consent, and might participate in the study without understanding the risks of the study.

a. Informed consent strategies: Just yesterday, after updating my Mac, I clicked through 5 agrees without reading any of the agreements. The fact is not a lot of people read online informed consent materials. Researchers have tried many different strategies to help participants to understand informed consent materials. Previous studies have divided information into smaller chunks, included pop quiz at the end, or developed a video based on the information to help participants to understand informed consent materials. Future projects must take additional steps to ensure participants understand informed consent materials.

3. Privacy settings: Facebook, ultimately, is a for-profit company, and they do and are allowed to change their privacy settings without consenting the users
a. Privacy changes: Many privacy changes have been implemented since the start of Facebook. For example, by using the “timeline approval” option, I was able to disapprove all the intoxicated pictures from my last night out, so you won’t get to see them. Many HIV (+) participants in the study did not want to disclose their HIV status to their Facebook networks. Therefore, researchers should be aware of these changes to help the participants to safeguard their privacy and confidentiality.

b. Facebook groups: There are three different types of Facebook groups: open, closed, and secret. Both closed and secret groups are invitation-only groups. In secret groups, individuals can only be invited by current members, but anyone can ask to join closed groups. The privacy settings should be modified based on the needs of the HIV (+) individuals.

4. Code of conduct for the study: Participants and researchers need to develop and to agree on a code of conduct before the study.

a. Respectful behaviors: The code of conduct will establish the norms of how the technologies are used by participants. For example, without getting permission, participants should not tag updates and photos that might reveal sensitive information from the intervention, such as HIV status or sexual orientation, on Facebook.

So yes, HIV prevention does take a village, and Facebook communities have the potential to change individuals’ high-risk behaviors. However, before any further development, we need to ensure that we know how to protect the participants. The implication of using social networking technologies in achieving behavior change is immense. I am sure you remember the “it gets better” campaign, when a YouTube video aimed to inspire changes to make it better for LGBT youth by Dan Savage went viral in 2010. Within a couple months, 500,000 people have made their own pledge to the cause. To me, that is the power of social networking technologies.

About

CBAM is a multidisciplinary center that seeks to advance the prevention and treatment of chronic illnesses, especially in communities with health disparities. As part of the UCLA Department of Family Medicine, CBAM works at the intersection of academia and community with a focus on treating addictions and preventing the spread of HIV.

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