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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