Help Everyone SHARE

Tuesday, September 27, 2016

Why Are We A Nonprofit?

With a launch coming up this fall, I have been constantly meeting with potential collaborators and donors about SHARE For Cures and the system we are building.  A recurring question in almost every meeting is, “Why are you a nonprofit?”

Yes, we are building a health information technology system.  Yes, I understand that most people in this space are for-profit. Yes, I am acutely aware that we probably could have taken venture capital money many times over by now if we were doing this as a for-profit.

But, while we need to be sustainable, generating profit isn’t the point. The point is that SHARE For Cures is about people: about patients, about caregivers, and about healthy people who want to make a difference and help find more cures. We are a nonprofit, quite simply, because we don’t want to profit on people. These are our people. We are them.  We want to make a difference for them.  And we want them to trust that we are not exploiting their health for personal gain. 

My Co-Founder phrased it quite eloquently in a meeting the other day: “We want to disrupt the current marketplace where corporations are monetizing data behind patients’ backs without any transparency or accountability for what they are doing.” Yes, that. There are institutions who are collecting your health data covertly - saying they are using it for “quality improvement” purposes or burying consent in complex terms and conditions  - so that they don’t need your explicit permission to collect, use and sell data about you.  

We are not those people. The SHARE For Cures Board is one of the most mission-driven groups I’ve ever known. They want patients and everyday people at the forefront of everything. They want to give people COMPLETE control over their own data. They want to do what’s right for society. They’ve all been touched by disease somehow and want to speed research and empower patients and loved-ones. They truly want more cures.

It’s almost too easy of a target but I happen to be one of those people who has spent thousands of dollars on EpiPens ($600 per pack, less than $10 to produce) for my child with a nut allergy.  It's one of so many examples of the numerous problems within the healthcare system. Our intent with SHARE For Cures is to be a solution. If we can solve this, or even change the conversation, by creating a disruptive health IT system where data isn't a commodity to be secretly bought and sold but shared by individuals freely for the benefit of all -and do so on a nonprofit budget with a nonprofit mission - we believe everyone will have won. 

And maybe then people will stop asking the question.  
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