HNPP · Physical Health

Crowdsourcing HNPP information with StuffThatWorks

Recently, a member of the HNPP community posted a unique website that aims to crowdsource medical information. StuffThatWorks is aiming to essentially create a databank of information for rare conditions so that people won’t be endlessly searching for treatments and understanding their symptoms. The website was created by Yael Elish, a core member of the Waze founding team. The idea was born after Yael spent a decade helping family members cope with medical conditions. She searched online endlessly and found that, time and again, other patients were the key to discovering the most effective treatments.

Here’s what it says on their website:

“Most of us dealing with a chronic condition spend hours online searching for better treatments because we feel no one has properly researched which treatments will work best for people like us. We’re right: nobody’s doing it, even for the most common or serious conditions, let alone more mundane or rare ones. It’s just too expensive to conduct large-scale patient interviews, and most medical research is done on very small groups of patients. The result? The treatments we get are far from being optimized for us.

“Just like Wikipedia, Waze or Kickstarter, when people come together for a common cause the result can be huge. We should be driving the research about our condition: we know how treatments affect us, and collectively we have more information than any organized research could ever gather. Together, we can build the world’s richest and most up-to-date database for treatment effectiveness, and use it to learn more about our condition— underlying causes, patterns in symptoms, comorbidities and which treatments work best for each of us.

“Patients dealing with chronic conditions share their experience in an organized survey. This data is then normalized, anonymized and analyzed using advanced machine learning algorithms that are programmed to look for valuable insights—for the entire condition community, for subgroups and for individuals. The insights are shared with the community, where members can comment, discuss and pose new research questions. Community members take an active role in determining the research direction. It only takes a few dozen people completing the survey to start generating useful insights. The more people join and contribute their information, the smarter and more personalized the insights become.

“Out of this experience, a small team of highly motivated people came together to create StuffThatWorks. Experts in crowdsourcing, machine learning, and medical research, StuffThatWorks is backed by three reputable VC firms, Bessemer Venture Partners, 83 North and Ofek Ventures.”

Check out their website for HNPP here.

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