July 27, 2012
People in the Middle East used social media to start political revolutions. And AIDS activists in the United States are tapping into the power of social networks to combat the spread of HIV here.
With the click of a button "we can mobilize community around efforts," said Todd Park, chief technology officer for the White House. "We have the tools to drive change ... advance the ball forward toward an HIV-free generation."
There are more than 155 million Facebook users in the United States and 107 million Twitter users in this country. And the people most affected by AIDS in the United States -- African Americans and women -- are primary users of social media.
Women constitute 69 percent of social networking users, according to a May 2011 Pew Internet and American Life Project study. African Americans use Twitter more than other ethnic groups (28 percent), according to a May 2012 Pew study.
People are already using social media to seek health information, said Susannah Fox, associate director of digital strategy at the Pew project.
One in five web users live with a chronic condition and one in four web users lives with a chronic condition and use the web to find someone like them, Fox said.
Social media and blogs are very important because they often create a lifeline for people with HIV, said Olivia Ford, community manager at TheBody.com. "Hearing stories online may be their first access point" into the community of people living with HIV/AIDS.
Social media tools are "not just toys to be played with on the side," Park said. "They are critical central resources."
The National Black Gay Men's Advocacy Coalition uses social media, especially Twitter and Facebook, to share information and identity needs of Black gay men, said Venton Jones, communications and education manager with the coalition.
The most important way the coalition uses social media is to communicate with Black gay men to get them to "move to a mindset of community mobilization," Jones said.
Iris House, an AIDS-service organization in New York City, uses social media to share health messages and to connect clients to services. But first they listened to their target audience on social networks to "learn what people were talking about and what they needed," said executive director Ingrid Floyd.
"Don't start using social media without a plan," Floyd said. "It's better not to have one than to have one that's not updated."
Before starting a social-media presence, AIDS service organizations need to determine their audience and purpose, create protocols and decide how they want to be represented, Floyd said.
AIDS workers have to take advantage of high-traffic conversations on social media, such as when people watch reality shows and tweet about them, Floyd said.
"You have to interject yourself into those conversations and say, God, I think it would have been great if she would have used a condom,' " Floyd said speaking of reality show characters' sexual choices. "Try to inject yourself into the conversations that people are already having."
Social media efforts also have to be steady, Jones said.
"It can't be a nine-to-five effort," Jones said. "You have to be ready to jump in when the award shows and reality shows come on."
Denise Espie, director of marketing at the Black Women's Health Imperative, said her organization tweets 15 to 20 times a day to consistently engage with its audience.
"Find your advocates and keep them engaged," Espie said, especially those with a lot of followers because they have influence in their social networks. "Even if you only have 200 followers, keep them by engaging with them."
When it comes to challenging institutions and holding them responsible for AIDS policy, funding, treatment and care "the media falls flat" and social media and blogs can fill in the gap, said Kellee Terrell, news editor at TheBody.com.
But social media can give AIDS activists and workers the opportunity to set their own news agenda when mainstream news ignores HIV-related issues.
"We can be our own storytellers," said Mark King, who started the video blog MyFabulousDisease.com. "We can all have a voice and speak about our own truths whether or not they're talking about it."
Social networks can also give AIDS activists the power to tell stories in nuanced and powerful ways that that traditional media outlets may overlook, said Silvia Petretti of Positively UK.
"Mainstream media still frames the discussion," Petretti said. "A lot of the language they use reinforces stigma. Unless we use our own language the stigma is not going to go away."
Online advocacy health efforts can be a powerful tool to combat the spread of HIV, Jones said. "Can a tweet or status update end AIDS? No. But it can spark a movement that does."
Sherri Williams is a freelance writer and social media editor.