The Real Cost of HCV is an interface for accessing data about hepatitis C in Eurasia. It will shed light on a disease that afflicts ten million people in Eurasia, helping them get the testing and treatment that they—and all people—deserve.
How did you get interested in working on issues related to hepatitis C?
I was placed with Eurasian Harm Reduction Network in the summer of 2011 for the Parsons/Open Society Foundations Fellowship in Information Design. I was awed by the work that they do around health and human rights, and by the incredibly difficult challenges with which many people with hepatitis C struggle, throughout the region. Furthermore, the issue of hepatitis C is practically invisible at the moment: While many advocacy organizations have just begun to tackle the issue in the region (and even here in New York), most nations have not recognized the magnitude and urgency of the problem—despite the fact that 10 million people face the disease in Eurasia, and more than 130 million worldwide.
What is your project doing to counteract the problem?
The Real Cost of Hepatitis C is a three-pronged strategy for creating a model of sustainable change around hepatitis C treatment access in Eurasia, the region of 29 former Soviet republics stretching from Central and Eastern Europe to Central Asia: 1) a patient reporting and discussion site, where patients can create testing and treatment reports, share stories, ask questions, and answer one another's questions; 2) an application programming interface, or API (basically, a dynamic data portal), that can be used to access hepatitis information from the patient site; and 3) local advocacy strategies based on the needs of individual cities and countries—utilizing statistics and stories from the patient platform to augment and support their messages. Ultimately, the campaign strives to create a sustainable campaign model powered by data shared by patients themselves and a means for individuals and advocacy organizations to easily access that data and visualize it.
What classes did you participate in at The New School that influenced your work?
There are so many! During my first semester at Parsons, I took a collaboration studio called SourceMap that was co-taught by Leo Bonanni (cofounder of Sourcemap.com, formerly Sourcemap.org) and Professor Sabine Seymour. It was my first introduction to the value of platform solutions to social and environmental problems. Chris Csikszentmihalyi's Globe class gave me further study of platform solutions for civic engagement, and in fact, it was Professor Csikszentmihalyi's nudges that ultimately inspired the hepatitis patient website. Lastly, my summer fellowship work with Eurasian Harm Reduction Network in Lithuania was key to helping me understand the depth and nuance of the problem I am addressing, understand the culture that I am working with, and develop a strong working relationship with Eurasian Harm Reduction Network. Without the fellowship, this project would not have been possible.