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.