Donate Your Data from Cancer Commons - Share Your Medical Data Anonymously

By Guest Blogger Sarah Stanley

This is a condensed version of a blog post entitled "Donate Your Data– Share your Cancer Story to Help Yourself While Helping Others"

A decade ago, Internet entrepreneur Marty Tenenbaum was diagnosed with melanoma. He visited several local oncologists, but each doctor recommended a different treatment strategy. With no clear solution, he decided to enroll in a clinical trial that was testing a melanoma vaccine.     

Donate Your Data Dashboard

The vaccine failed the trial. But, for reasons unknown, it saved Tenenbaum’s life.

Inspired by the difficulty of navigating his options, and the need for better ways to figure out which treatments will work for which patients, Tenenbaum founded Cancer Commons—the first & only open access nonprofit collecting and learning from real patient experiences to give patients the information they need.

To support this mission, Cancer Commons has now launched its new Donate Your Data (DYD) Program, an online registry that empowers people with cancer to anonymously share their cancer experiences to advance research and, in return, inform their own clinical care.

To learn more about Donate Your Data please watch this video:

https://www.youtube.com/watch?v=f3NyZlP5gV4

For now, DYD is available only to lung cancer and melanoma patients, but Cancer Commons will soon be expanding to cover most cancers. If you have or have had melanoma or lung cancer, please consider joining Cancer Commons in making the dream of personalized cancer treatment a reality for everyone. DonateYour Data now.

For more information, visit http://www.cancercommons.org. Follow Cancer Commons on Facebook and Twitter.

Help for Using the Internet to Research a Significant Health Diagnosis

In this book Andrew Schorr gives helpful advice on how to best navigate the internet if you are researching a significant health diagnosis.

According to the book review on the Amazon website: Gone are the days when patients take life-changing diagnoses lying down. The first place people go to learn more about their health, especially when it is at risk, is the Internet. But this unregulated channel can be as harmful as it is beneficial when it comes to medical content. As a step-by-step guide, The Web-Savvy Patient: An Insider’s Guide to Navigating the Internet When Facing Medical Crisis explores topics such as wading through search engine results, connecting with online communities, defining conditions, identifying the specialists, and organizing the outcome of your research so that doctors will listen. Delivering practical instruction and supplying real-life reassurances, author and recognized patient empowerment pioneer Andrew Schorr encourages individuals and family members to retain control rather than fall victim to fear and worry. Schorr offers up true stories of empowered patients alongside the details of his own experience as a cancer patient, revealing how the Internet led him toward the physician, hospital, and treatment that he believes saved his life. Enlightening and logically organized, the book is easy to read and easy to relate to. Respected medical experts, support groups, and patients agree that when it comes to improving the quality of online health content, Schorr, a longtime patient educator, medical journalist, and leukemia survivor, is the ultimate expert.