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If I could have invented one thing, it would have been a medical database of patient profiles and treatments that would be accessible to the entire health community. Patients, caregivers, doctors, researchers, and pharmaceutical companies would be able to share what they know. PatientsLikeMe.com allows patients to take control of their health by sharing their health, connecting with others going through similar situations and learning from each other.  I’d love to start an Adrenal Cancer community on PatientsLikeMe and have inquired because currently it looks like it’s open to a handful of other health conditions. 

The Openness Philosophy of PatientsLikeMe.com

“Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.”
 
“We the people have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost.”
      -Jaime Heywood
 

Please watch this video: Jaime Heywood on the big idea that his brother inspired.

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