A System So All Patients #CanServe by Sharing

By Jennifer C. King, PhD and Joshua Mann, Co-Founders, SHARE For Cures

(This blog was originally posted on Medium on October 17, 2016.)

Today, SHARE For Cures released the first version of our new SHARE (System for Health And Research data Exchange) health technology platform. As a 501(c)3 nonprofit, we are driven by patients and are creating this technology so that all patients, loved ones, and eventually anyone will be able to give back and break down barriers to research and help find more cures.
Today’s launch, in collaboration with the Cancer Moonshot, is an initial project to understand immunotherapy use, side effects, and benefits in cancer patients. We are partnering with trusted patient advocacy groups Lung Cancer Alliance and Melanoma Research Foundation to reach patients who have taken the appropriate therapies. This class of drugs is new to the market and there is very little data about their use in the community and who may benefit most from taking them. The real-world data collected in SHARE, provided by patients, can help researchers and clinicians understand how to use these drugs to help the most people in the future.

Learn more about the project here.

For our users, the process is easy. You create a secure SHARE account, then connect hospitals and medical providers that you have seen. You can also connect health and fitness apps. You are able to view (and print and download) all your data in one place, for free. You then tell SHARE For Cures what data you feel comfortable sharing and what data you don’t, and with whom. All sharing is directed by you. You are the only person who has the power to determine with whom, and how, we will share your data. It’s that simple.

SHARE Settings: SHARE For Cures users can choose exactly what health data they want to share for research and what purposes they want to share it for.

While today the platform is only open for cancer immunotherapy patients, we want to expand soon to all cancer patients and eventually to anyone who wants to contribute to research. Many members of our Board have been personally touched by cancer and worked in the oncology field for a reason. We developed this technology as a nonprofit because, just like the Cancer Moonshot, we want to break down data silos, move research forward, and find more cures. This is a personal mission for all of us and we believe we can serve by accelerating research through patient engagement and patient-directed data sharing.

Everyone should be able to contribute to research. Please check out our website (www.shareforcures.org) and support us by joining the project if you qualify, and donating to the mission if you don’t, so that we can rapidly spread this technology to more people. Help us find #MoreCures.

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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Nonprofits always need all the help they can get.  Please give today to allow ANYONE to contribute to More Cures.