Community voice
by Jesse Lloyd Goldshear, MPH Research Coordinator, Social Media and Health Innovation Lab, University of Pennsylvania In 2014 the CDC reported almost 2 million new cases of the top three sexually transmitted infections (STIs), chlamydia, gonorrhea, and syphilis – all increases from the year before. Adolescents and young adults (prime users of social media platforms) accounted for almost two-thirds of these new cases of gonorrhea and chlamydia and have the highest risk of becoming infected.[i] The CDC also reports that in 2014 there were nearly 50,000 new HIV diagnoses, about one-fifth of which were diagnosed in patients in the same age-range.[ii] A new diagnosis of a STI or HIV can not only be scary for many individuals, but can also be accompanied by feelings of shame, lack of self-worth, and perceived stigma and isolation from others. The effects of stigma surrounding STI and HIV infection cannot be understated, especially when compounded with racial, ethnic, or sexual minority status. Research has shown that stigma and shame surrounding infection can become barriers to prevention and treatment: people may not seek testing, even after sex they knew to be risky, due to social stigma surrounding these infections.[iii] Feelings of shame are especially high among HIV-positive individuals who are also racial/ethnic minorities. This stigma can lead to a lower quality of life, independent of other factors.[iv] Additionally, HIV stigma is associated with lower self-reported physical and mental health status, and lower adherence to medication regimens.[v] Stigma, shame, and fear of a partner’s reaction to a diagnosis may motivate people to not disclose their status resulting in higher rates of infection transmission, especially among marginalized groups and vulnerable populations. The rise of social media platforms in the last decade has connected more people than ever before, enabling almost-instantaneous sharing of information between individuals, communities, organizations, and governments. Already, we’ve seen how these platforms have been used in a variety of situations where rapid communication between large groups was beneficial. In 2013, Twitter overflowed with information about the Boston Marathon bombing, well before official media and emergency channels were able to spread word about the tragedy.[vi] The following year, Facebook launched a feature that let users notify friends and family of their status during a natural disaster in their area.[vii] This ability to communicate and transmit information rapidly has drawbacks however: Twitter was recently the platform-of-choice for coordinated racist and misogynistic attacks against actress Leslie Jones, forcing her off of the social media network.[viii] But how are these platforms important for public health? More specifically, how are they important in the fight against stigma that surrounds STI and HIV infection? Social media platforms have already become tools for rapid dissemination of public health news, research, and programming. Groups such as the CDC, the Philadelphia Department of Public Health, and Drexel University Dornsife School of Public Health, all maintain constant online presences on Twitter. Research groups, such as the Social Media and Health Innovation Lab at University of Pennsylvania and the Center for Digital Health Innovation at University of California, San Francisco, look into how social media can improve the health of populations and how communities talk about health issues on social media platforms. Studies like this one [ix] utilize social media platforms to reach key populations that were once considered “hard-to-reach.” Planned Parenthood uses Twitter to advocate for a variety of causes surrounding HIV/AIDS and sexual health. Outside of HIV/AIDS and STI advocacy, Planned Parenthood uses Twitter to advocate for women’s reproductive rights, and racial, gender, and sexual equality. They are just one example of large organizations advocating for a variety of public health causes around the world using social media. Now however, we’re seeing social media become a tool for advocacy and activism specifically on the themes of HIV/AIDS and STIs. Groups such as POZ magazine, Black Women’s Health Imperative, and the International AIDS Society post daily to Twitter, urging their audience to speak up in support of HIV/AIDS advocacy. Groups like these also maintain an active Instagram presence, sharing images of support, outreach posters and fliers, and image-based calls to action. These organizations’ use of social media is and will be key to ending the stigma and shame that surrounds a diagnosis with HIV or an STI. Outside of organizational efforts however, individual efforts will be crucial to ending this stigma at a societal level. As of this writing, there have been 21 Twitter accounts (organizations and individuals) which used the hashtag #HIVstigma in a tweet in the past four days, meaning almost 46,000 other Twitter users could have seen this message in that time period.[x] Campaigns to end stigma that rely on social media-driven efforts have the potential to reach massive amounts of people in short periods of time due to the nature of social networks. Started by organizations, these campaigns must be driven by individual users within their own social networks. These future campaigns can take multiple approaches to ending HIV and STI stigma, ranging from raising awareness of the prevalence of these infections, to dispelling myths about the people who acquire them, to spreading personal stories of people who live with them. Some campaigns may be able to utilize a multi-pronged approach, while others will benefit from using a more focused approach. Informal groups of Facebook and Twitter users such as Black Twitter[xi] are already driving advocacy on a variety of public health-related issues including systemic racial injustice in the US criminal justice system and sexual assault of women-of-color, among many others.[xii] The hard-driving and real-time advocacy of networks like Black Twitter gain massive mainstream media attention and have brought issues into the broader public spotlight like they might not have been a decade ago. The social-justice orientation of this and similar networks will be instrumental in the success of future attempts to end HIV and STI stigma via social media networks.
As a public health community made up of public- and private-sector health care workers, university educators, students, and advocates, we must focus on bringing an end to the life-threatening stigma and shame that surrounds a positive HIV or STI diagnosis. In this new era of social media a large part of our efforts must focus on how to leverage the influence of individuals, networks, and organizations to promote this goal online. Traditional boots-on-the-ground advocacy must be supplemented with social media savvy; only then we will be able to foster the change we wish to see. ----------------- [i] http://www.cdc.gov/nchhstp/newsroom/2015/std-surveillance-report-press-release.html [ii] http://www.cdc.gov/hiv/statistics/overview/ [iii] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4334654/ [iv] http://www.sciencedirect.com/science/article/pii/S1055329009000338 [v] http://link.springer.com/article/10.1007/s10461-008-9455-4 [vi] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3706072/ [vii] http://www.newsweek.com/facebook-launches-safety-check-feature-natural-disasters-277935 [viii] http://www.nytimes.com/2016/07/20/technology/twitter-bars-milo-yiannopoulos-in-crackdown-on-abusive-comments.html [ix] http://www.jmir.org/2014/4/e113/?trendmd-shared=0 [x] http://keyhole.co/realtime-rebuild/jRhSDc/HIVstigma [xi] http://gradworks.umi.com/36/68/3668450.html [xii] http://www.theatlantic.com/technology/archive/2015/04/the-truth-about-black-twitter/390120/ |
Who Can Contribute?Community Voice authorship is shared by diverse members of the Public Health and Philadelphia communities. Archives
March 2017
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