New Media in Changing the Response to HIV

L-R: Miguel Gomez, Michelle Samplin-Salgado, Todd Park, Deron Perkins, Venton Jones, Ken Williams, Eunice Gnay Namirembe, Oriol Gutierrez, Ingrid Floyd, Susannah FoxOn Monday, July 23, HIV.gov hosted a satellite session at AIDS 2012 on the State of New Media and HIV), participants recited the following declaration:

“We call upon the HIV community to declare that new media and emerging technologies are critical in helping us connect, create, listen, learn, and engage as we move towards and AIDS-free generation.”Todd ParkExit Disclaimer, Chief Technology Officer for the White House, kicked off the session by describing how, two months ago, President Obama released the U.S. Digital Government Strategy. He noted that exactly two years and ten days ago the President also released the U.S. National HIV/AIDS Strategy. In his remarks, Mr. Park said, “I’m convinced these two Strategies have a synergy that really can make a difference in people’s lives. They are roadmaps to ensure positive response to the needs of all Americans, and we hope a useful tool to our colleagues outside the U.S.”

In the introduction to the new Digital Government Strategy, President Obama states, “I want us to ask ourselves every day, how are we using technology to make a real difference in people’s lives?” Todd added, “That’s why we’re here. To make a difference in people’s lives...to make a difference as we move towards an AIDS-free generation.”

Panelists each shared how they are using new media to strengthen their respective actions on HIV/AIDS.

It’s never too late to learnSusannah FoxExit Disclaimer of the Pew Internet & American Life ProjectExit Disclaimer cited statistics that 1 in 4 people living with a chronic health condition connect with peers via social networks. She highlighted how engagement leads to better health outcomes. New media can be that platform. Susannah shared the story of her bright and curious grandmother, who when seeing the internet for the first time towards the end of her life, responded with discouragement, “I was born too late.” In fact, she quickly learned that she could connect with others, and even into her mid-90’s, participated in online communities. Susannah said, “we all have something to learn and we all have something to teach.”

Eunice NamirembeExit Disclaimer from Uganda, who manages the initiative Text to ChangeExit Disclaimer, talked about the simplicity and power of mobile text messaging to drive people to get tested and change their behavior. In Uganda, 15,000 text messages encouraging HIV testing yielded a 20% response rate. As those who responded to the text waited in line to be tested, a community was built; an overwhelming response to a simple text message.

Why it’s important to listenIngrid FloydExit Disclaimer of Iris HouseExit Disclaimer spoke about using social media to listen and using platforms such as Facebook and Twitter to interject messages related to HIV prevention into online interactions. She emphasized the importance of listening before engaging and of using events and pop culture references to inspire conversations about safer sex and HIV prevention.

Connect and engageVenton JonesExit Disclaimer of the National Black Gay Men’s Advocacy CoalitionExit Disclaimer described his experience growing up as a child of the digital generation. He noted how each step in his life has been marked by a change in technology, and described the importance of disclose his own HIV status. By sharing his status online, Venton helps gives a face to HIV/AIDS, creating a space for broader conversations about stigma and disclosure. Following Venton’s presentation, an audience member shared his own story about disclosing his HIV status on Facebook. It was a testimony to the power of new media to connect people.

Oriol GutierrezExit Disclaimer of POZExit Disclaimer has lived as a digital pioneer, using new media and building a collection of best practices around video, blogging, and social media. “New media allows me to share my story,” Oriol said. Consistency builds community, he said, regardless of how you share your message. Each platform requires a specific skill set and approach, but consistency over time is a key discipline.

The power of video and the spoken wordThe session began and ended with creative expressions using new media to educate and inform. Deron Perkins of Real Talk DCExit Disclaimer, a project of Metro Teen AIDSExit Disclaimer, set the tone of the session with an eloquent and energetic spoken word in which he referred to AIDS as the “DC Viper”, striking far too many people living in Washington, DC. Deron uses social media as a platform to engage with DC youth, thereby raising awareness of HIV risk in the city.

Ken WilliamsExit Disclaimer of the Test Positive Awareness NetworkExit Disclaimer and Ken like BarbieExit Disclaimer created a videoExit Disclaimer for the satellite, which described how he has used new media (specifically YouTube) to share his story of living with HIV.

HIV.gov Director Miguel Gomez closed the meeting by highlighting the increased use of new media by the HIV community. He highlighted the importance of educating our colleagues about the power of new media as we move towards and AIDS-free generation. Miguel ended by saying, “We have the tools, we have the stories, and we are building the evidence to create that change.”

HIV.gov would like to thank the Satellite Session Planning Committee for their time in helping us plan The State of New Media and HIV: Krisha Stone at Gay Men’s Health CrisisExit Disclaimer, Deb Levine and Bhupendra Sheoran at ISIS, Raul Posas at Metro TeenAIDSExit Disclaimer, Oriol Guitierrez at POZExit Disclaimer, James Loduca from the San Francisco AIDS FoundationExit Disclaimer, and the National Minority AIDS CouncilExit Disclaimer.

How are you using new media to connect, create, engage, listen, and learn?