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Harnessing the power of social media for social good in healthcare

Nicola Parry

In the final day of Healthcare’s Grand Hackfest: Idea to Breakthrough Innovation in One Weekend, teams prepared the final push for their ideas developed over the course of a few days at Massachusetts Institute of Technology.

Griffin Tschurwald, a student in electrical and computer engineering at Franklin W. Olin College of Engineering in Needham, Mass., and his team continued to hatch their plan to use social media for social good.  

“We’re on the track of rare diseases, and our innovation is called RareCollab,” said Tschurwald. “It’s sort of like a social media site for people with rare genetic and other rare diseases.”

He explained that it takes more than seven years for most people with a rare disease to be diagnosed, and they may be initially misdiagnosed two or three times on average. So the team hopes its innovation will help reduce this delay for patients, since it will enable them to connect with other people with rare diseases, as well as specialists and doctors around the world. And, because there are no FDA-approved medications for many of these patients and often their only hope lies in clinical research trials, this site will help these individuals connect with the appropriate trials.

Tschurwald and the team are also incorporating a face-recognition tool in the innovation, since many rare diseases manifest in characteristic facial features, and could be identified by a three-dimensional analysis of a facial image.

“It took a little while to flesh our idea out, and we went through a couple of iterations of different ideas,” explained Tschurwald. The main stumbling block so far has been the actual coding of the website, he said. But to overcome this issue, the team resorted to using online resources in web development. “None of us has a ton of web development experience, but we’re pretty fast learners,” he said. “We’re kind of learning as we go – we’re all learning new things, and because we’re all better at different areas, we’re trying to collaborate as a team.”

As the team progressed through the hack, its members also discovered that they were initially too focused on the final product. “We were spending a lot of time trying to code a product – we didn’t realize that the pitch is by far the most important part,” said Tschurwald. “We were more interested in getting a working product than actually selling it. And I guess we have to try and sell it first in this case, because you just don’t have the time or resources [during the hack] to get a really good product – you have to show them your vision.”

Tschurwald said pharmaceutical companies would play an important role in the site from a monetization standpoint. The companies will also be able to monitor the site for disease trends, and mirror their drug development approaches accordingly to help these patients.

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