HIV has a tremendously high incidence rate in certain populations in the US, notably men who have sex with men (MSM), a group that accounts for up to 82% of all infections. In such populations, strategies for preventing HIV have proven difficult to achieve and may require more innovative solutions. Earlier this month, a cluster randomized trial was published in the Annals of Internal Medicine that showed that social media may provide one such solution. Led by Sean D. Young, Assistant Professor in the Department of Family Medicine and Center for Behavior and Addiction Medicine at the University of California-Los Angeles, the research team delivered information about HIV or general health to MSM via Facebook over a 12 week period. Young and colleagues showed that men in the intervention group were more likely to request, complete, and return home HIV testing kits than those in the control group. We had a chance to speak to Dr. Young about this fascinating research.
Ravi Parikh, Medgadget: Could you tell us a bit about your background? How did you get involved in disease prevention through social networks?
Sean D. Young, PhD, MS: My grandmother always told me to follow my passion and that my varied interests would come together in the end. Even though my background areas of study/work might have appeared disjointed, grandma was correct in that all of these experiences were important in guiding my current work.
My interest in using technologies for prevention stems from my love for music. This might be confusing, so I’ll give a quick explanation. Other than the basic needs to survive, I’ve always needed only a few other things in life: the ability to be creative in my work, the ability to learn by pursuing areas where I have limited knowledge, close relationships with others, and being able to think that my life and work improves society and the lives of others. When I was in high school, I thought about becoming a doctor as a way to address these needs, but I was dissuaded by a number of doctors who advised that medical practice would not be the way I had envisioned it. I instead decided to pursue my love for music, by continuing to play in a punk-funk band while studying ethnomusicology at UCLA. Over time, I learned that my passion for music didn’t come from music itself, but from my interest in working with people with diverse ideas and our ability to create something larger than I could create myself. I learned that I loved the way people think (psychology), but continued to have passion for health and medicine. At the advice of my college health psychology professor, I decided to apply for graduate school in psychology before embarking on a music journey around south america. I was accepted to study psychology and health economics at Stanford. Being surrounded by thousands of passionate engineers, I was introduced to the world of technologies and entrepreneurship and learned to apply my creativity toward designing new technology solutions. I conducted research at the intersection of health, psychology, and technology while working on these entreprenuership ventures (such as social media technologies) that later helped inform my research. My research has continued to take the evidence-based approaches I’ve learned on health behavior change science and apply them to relevant technologies. I’m optimistic that this approach (behavioral psychology + technologies) will dramatically improve health and medicine.
Medgadget: Describe to us the intervention – what information and resources were provided through the Facebook groups?
Young: This was a 12-week trial with an intervention group and a control group. We added a follow up with participants a year later to see if the effects sustained over time. Participants from populations at high-risk for HIV were asked to join a private/secret group on Facebook that we created for the study. Once they joined, peer leaders in the group tried to send them messages/chats/group posts on how to change their health behaviors. Peer leaders were trained at UCLA in behavior change fundamentals and how to use social media to change people’s health behaviors. Peer leaders were therefore provided with the tools to change participants health behaviors and we left it up to them to determine the most relevant ways to deliver those tools. Participation was voluntary and they were not obligated to respond to peer leaders or stay in the group, so we worked each week with peer leaders on how to keep participants engaged.
Medgadget: What outcomes did you measure, and how effective was social networking at encouraging prevention?
Young: We measured:
1) Engagement, or how much people (voluntarily) communicated on the group: We found high rates (over 95%) of engagement. Engagement remained high over time, as these groups turned into real communities. Even 2 years after the study has ended, people continue to use these study-created groups to connect with each other and share personal information and stories.
2) Content, or did people talk about HIV prevention and health-related topics: In the initial stages of the intervention, the majority of conversations were focused on friendly topics (.e.g., “hey, you having a good day?”). Over time, these friendly conversations decreased and the majority of participants conversations were focused on HIV prevention and testing, demonstrating the result of the intervention in spreading throughout the study communities.
3) HIV testing: Compared to the control group, the intervention group had 24% higher rates (44% vs. 20%) of requesting an HIV test.
Overall, I don’t think its social networking or social media that made the intervention effective. I think the success stems from our approach in applying behavior change science to technologies (in this case social media) in a clinically-appropriate manner. If there were a secret to the success of the intervention, this would be it.
Medgadget: Have you found that the effect of social networking sites on disease prevention extends beyond HIV to other diseases?
Young: Yes, we are finding this approach to be consistent in various locations/countries and diseases. Again, I don’t think behavior change would automatically happen if you put people on social networking sites and give them health information. For behavior change to occur, we need to know people’s psychology and how to apply the science behind behavior change to social media and other technologies.
Medgadget: What responses have you received from physicians and other health providers about how social networks can supplement the physician-patient relationship?
Young: We continue to receive requests from physicians and clinics for help on how to design and implement these approaches in their clinical settings. A number of startups and technology companies have also contacted us for feedback on how they can improve engagement for their health technologies. I’m really excited about the future in measuring how this approach could lead to long-term improvements in not only health behavior/prevention, but also in treatment.
Medgadget: Are there any thoughts by your group of using other social media platforms or technologies (e.g. mobile phone networks) to spread information about disease prevention?
Young: Yes, just as in startups or product design, the approach begins with an understanding of the user/patient. When applying this approach, we take the following steps: 1) determine the technologies that are being used by the target population, 2)determine whether and how the user will be receptive to behavior change with that technology, and 3) use the technology as a platform to deliver clinically-appropriate behavior change principles.
Medgadget: What are next steps for this project?
Young: We continue to test these methods in other countries, with other diseases, and through other technologies. I’m hoping to look at the potential cost savings/cost-effectiveness of these approaches once we have enough data.
Original article in Annals of Internal Medicine: Social Networking Technologies as an Emerging Tool for HIV Prevention: A Cluster Randomized Trial
More from Reuters: Facebook peer groups may be useful for HIV education