Yael Elish spent over a decade watching her daughter struggle with a chronic condition. And while it was something that is generally considered “mundane,” it was taking a heavy toll on her and on the entire family. They saw different doctors and specialists, but the treatments she was prescribed weren't working and Yael believed, intuitively, that a better treatment had to be out there.

 

After researching online, reaching out to others with the condition, and consulting with experts, Yael finally found a medical treatment that her daughter hadn’t tried. Almost immediately, the condition went into remission and years of suffering came to an end.
 

Then, this experience repeated itself with another one of Yael’s family members. And after speaking with more and more people, it began to seem like the majority of people dealing with a chronic medical condition dedicate endless hours researching, talking with fellow patients and scanning online groups, searching desperately for better treatment options— for confirmation that their side effects are normal, or for information showing that changes in diet, lifestyle or vitamins can make a difference.

This struggle and tireless search to find an optimal treatment is not the exception. Far too often, it is simply part and parcel of the experience of living with illness.

 

It is not surprising that finding the right treatment is a challenge, since every one of the nearly 10,000 chronic conditions has hundreds of possible treatments, but other than in limited clinical trials, the information about how treatments perform in the real world is not collected and analyzed. With the lack of big data to help analyze which treatments work better and for whom, the vast majority of patients are being treated on a trial and error basis.

A patient is given a treatment. If it doesn’t work, they are prescribed with the next and so on. What’s missing is information from a massive number of patients about how treatments work. Everyone is after real world evidence—not only the individuals managing their illness, but also the pharmaceutical and medical world too. But it has always been too costly to collect.  

 

For Yael, who was one of the Waze founding team members and its Head of Product, the solution was obvious. Crowdsourcing is often the only way to solve big problems that are otherwise too costly or complex to address.   

 

What Yael also realized is that people are the key to solving this. The individuals who have tried various treatments are the ones who know best what works. But what the world lacked was a way to allow people everywhere to share their experiences in an organized way, optimized for analysis of treatment effectiveness. Once collected, the data is invaluable as it also provides a fresh knowledge base for every condition.
 

StuffThatWorks was founded at the end of 2018. It is already the world’s largest database of patient reported outcomes (PRO) for 150 conditions, with more than 240,000 contributors. Individuals have shared more than 13 million points of data, organized by chronic condition and optimized for analysis. 

 

Within the condition communities, members can learn from the data and see insights about anything from age of onset to, most reported and most indicative symptoms, early symptoms, indicative comorbidities, aggravating factors and, of course, effective treatments. 

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Read more about StuffThatWorks for HS here. 

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