So They Can Know
SoTheyCanKnow.org helps people with sexually transmitted diseases (STDs) notify their partners. People diagnosed with STDs tend to notify 23% of their sex partners. So They Can Know aims to get more partners notified, so they can get tested and treated, stop spreading the STD, and then pass similar notifications through their own sexual networks. The site provides tips and videos to help people tell their partners, and allows users who aren’t willing to have that conversation to anonymously email their partners to let them know they should get tested and help them find testing services. Our site was built entirely by volunteers and launched at a cost of less than $3,000. Developers, graphic designers, producers, researchers, health communication experts—all chipping in their time for free. While relying on volunteers has meant that we often have to go through cycles of development, there has always been someone else waiting in the wings to pick up the torch.
Multiple stakeholders pitched in and gave advice—experts from the CDC, Planned Parenthood, Johns Hopkins University, the health departments of Baltimore, San Francisco, New York City, Philadelphia, South Carolina, and many others. Hundreds of young adults gave feedback on the design and concept of the site (83% of whom said that they’d use a service like ours if they weren’t willing to notify a partner in person). And we are starting to find organizations and individuals interested in supporting our work. We want to empower others to be fearless- to become advocates for the health of their partners and their communities. And we believe that if we make a difficult situation just a little easier, people do the right thing.
So They Can Know has been built over the last three years. When I first had the idea, I sketched out mockups, consulted experts in the field of technology and sexual health, and researched why people do and don’t notify their partners. Next, I surveyed young adults on whether or not they would use an anonymous STD partner notification email service, how they would feel about getting a notification email, and whether they would get tested if they got an email. I also conducted focus groups with providers on how they would feel about a website of this type. After finding that the website had a good chance of success, I founded Sexual Health Innovations in November 2011 – a nonprofit dedicated to improving sexual health through the more effective use of technology. I then recruited dozens of volunteers to help build the product. Finally, after a year of coffee, coding, and board meetings, So They Can Know was launched in September of 2012 and is now up and running. The STCK Study, an uptake evaluation of the website, will allow us to monitor the website’s use and evaluate its impact over time. We have 20 clinics enrolled in our pilot, and Planned Parenthood will be inviting their affiliate clinics to enroll. As we grow, we plan to expand our services by building out an anonymous text messaging notification service, creating a Spanish version of the website, and integrating our services into those offered by state and local health departments across the US.
The team at Sexual Health Innovations is dedicated to improving sexual health in the United States. As the Executive Director, I have had the pleasure of recruiting and managing a talented and passionate team of volunteers. From graphic designers, to programmers, to marketing buffs and fellow epidemiologists, each volunteer has made an impact on our organization. Two of these volunteers, Jenny McManus and Liz Posey, have recently come on as paid contractors for the nonprofit, and both have Masters in Public Health from Johns Hopkins. The three of us have the diligence and drive to get So They Can Know into clinics and to further improve the product. Sexual Health Innovations also has a supportive and experienced Board. Our Board of Directors includes Charlotte Gaydos (a professor at Johns Hopkins and a leader in the field of STD research), Lynn Barclay (the President and CEO of the American Social Health Association), and Stefan Adelson (the manager of Adam4Adam). Our Advisory Board consists of leaders from several health departments across the US, the Centers for Disease Control, and Johnson & Johnson. The diversity of perspectives and experiences on our board will enable Sexual Health Innovations to continue to make a great impact. Ultimately, So They Can Know is only a part of what Sexual Health Innovations can achieve in sexual health and technology. There is so much more we want to develop to help improve sexual health in this country, and we have the right team to do it.
The Fearless Changemaker
I am someone who wants to help people have better sex lives. When I was 17, I started teaching sex education in San Francisco with a program called Aim High. When I was in college, I created my own major in Public Policy/Human Sexuality and founded a Pomona College chapter of FemSex, a group where women get together weekly to discuss sexual empowerment and wellbeing. I then worked in HIV advocacy with The AIDS Institute in DC and later with the White House Office of National AIDS Policy. After the White House, I went to Johns Hopkins to pursue my Masters in Public Health and my PhD in Infectious Disease Epidemiology. In short, I’m a sexual health nerd and always have been. I started working on So They Can Know three years ago with an aim to increase rates of STD partner notification. The website was built entirely by amazingly talented and dedicated volunteers. We launched recently, and I have had the opportunity to speak about the website at events such as Health 2.0 and TEDxMidAtlantic. Now, we need your help. We have a great product, a great team of health, research, marketing, tech, and design gurus. We have a ton of enthusiasm, but we don’t have, well, money. Without money, it’s hard to pay our rent while we refine So They Can Know and get the word out to the communities that need this service the most. Please vote for us today. Because sex doesn’t have to come with STDs.