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. 

Why I'm Glad #GivingTuesday Is A Thing

Thanksgiving is my favorite holiday. Every year, 30-40 of my relatives cram into my parents’ house for a few hours to give thanks and celebrate as a family. It’s complete chaos. My now-husband, an only child, looked so overwhelmed the first time he attended that I thought he might never come back. My parents were high-school sweethearts so it’s both sides of our family together. My mom is in charge of turkeys and pies and everyone else is required to bring something. Usually, four separate tables are set throughout various rooms of the house and my mom always pulls out the good china, no paper plates.  The macaroni and cheese recipe has outlived my grandmother but it still involves 2 pounds of Velveeta. We’ve been through generations: having the majority of attendees over 70 and later having toddlers outnumbering adults. There’s been joy, grief, arguing, family scandals, a lot of football games, and so many opportunities to give thanks without all the focus on gifts like other holidays. I have so much appreciation for having a family that shows up through thick and thin. For better or for worse, they will be packed in on top of each other for a few hours to celebrate together and just be thankful.

I used to marvel about how my one cousin, after this evening mixed with gratitude and craziness, would get up with her best friend to shop at 4AM. I know it was their bonding time but here was an unbelievably non-materialistic, giving woman going out and fighting the other shoppers in the early-morning Black Friday commercial madness. It always seemed strange. And then, it got worse. Another cousin, who had worked at a large craft store for years, had to leave dinner early to go to work. Black Friday and the shopping mayhem wasn’t just on Friday anymore.  It had moved to Thursday.  The family day. The day of thanks.  I was horrified.  This got worse over the years. I just checked and this year that particular store is opening at 4pm, which is when our Thanksgiving dinner starts. The big sales are wrecking the family time and the spirit of the day. I can’t stand it.

So I’m extremely thankful for the 92^nd Street Y who started #GivingTuesday in 2012. As a friend of mine would say, “That’s a thing, right?” Yes, it is. Giving Tuesday comes after Black Friday and Cyber Monday and is the global day of giving back. To me, it embodies what Thanksgiving should flow into…. Give thanks for your blessings and then pay it forward and help others. This year for Giving Tuesday, I encourage everyone to contribute to my favorite cause, SHARE For Cures, a nonprofit that I co-founded with a brilliant friend of mine (it was really his idea).  SHARE For Cures is going to make more cures possible for all types of diseases by allowing anyone to contribute their health data.  Learn more here.  But if you don’t give to SHARE For Cures, there are a lot of other great nonprofits out there too - I’ve worked for a few. Give to someone. Embrace the spirit of the season and make a difference. The important thing is that you share.

To learn more and give to SHARE For Cures: http://igg.me/at/sT8rWOxEQzM  

To join our #GivingTuesday Thunderclap movement: http://thndr.me/wxLRsv  

Check out our new video... SHARE For Everyone - SHARE For Cures

Everyday People Powering Research

Last week, I was at a meeting on how to determine the value of healthcare (a difficult topic) and heard a comment that the group’s deliverables should not be simply “patient-centered” but instead should be “patient-driven.”  This statement perfectly echoes the changing world of patient advocacy and patient engagement.  More emphasis is being placed on patients and their experiences and many people are looking at how to bring about this change in healthcare as well as bringing the patient into science and research.

In 2010, the Patient Centered Outcomes Research Institute (PCORI) was formed and started giving out large research grants--but only if you have a patient-centered project and team.  Since then, I have seen researchers pay a lot more attention to incorporating not only patient advocacy organizations but the patients themselves into designing and carrying out studies.  Increasingly, patients are being asked to comment both on specific research studies and on broader policy issues.  This trend towards patient engagement has become so sweeping that a new program called “The Science of Patient Input” was just announced in June by Faster Cures, an action tank determined to remove barriers to medical progress.  The concept of incorporating patients into research is here, and it’s here to stay.

But there’s still something missing.  Educated patients are moving the needle forward towards making the system patient-centric by giving feedback about their experiences and providing input on clinical trials, research studies, and proposed law-making.  But what about the rest of us?  What about me? Thankfully, I’m actually pretty healthy.  So what can I do? Or my brother, who’s in finance and doesn’t know anything about medicine, how can he drive research?

This is where SHARE For Cures comes in.  SHARE For Cures wants to change “patient-driven” to “people-driven.”  Anyone, everyone,  everyday people.  We want everyone to be able to choose to share their health data to move medical research forward.  Clinical trials tend to be on a small group of individuals that meet specific eligibility criteria; however, many researchers and drug developers are interested in effects on “real-world” people.  We are the real world people.  Whether sick or healthy, our health and wellness data can make a difference.    Check us out, follow us, and sign up to be an early adopter.  Learn how you can help power research.