By Sarah Stanley
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.
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.
Please watch this short video to learn more about Donating Your Data
“Everyone who has been diagnosed with cancer has felt the fright and anguish of having to make life and death decisions without adequate information, data, or time,” Tenenbaum says. “I vowed to do something to spare patients from this agony.”
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.
Through DYD, each patient records and updates information about his or her cancer experience in a private profile. This information may include stage, treatments, molecular test results, treatment responses, side effects, and more. All data will be de-identified and made freely available, giving doctors, researchers, and patients themselves an unprecedented resource to determine the best approaches to cancer care, according to each patient’s unique clinical history.
Based on the data they provide, patients receive customized news feeds and alerts to relevant clinical studies and trials, reports on any research that uses their data, and notifications concerning important research findings, all delivered through each patient’s personal DYD dashboard. Each patient can graphically track his or her cancer journey on a timeline, and will be able to selectively share it with physicians and other patients.
DYD does not focus solely on figuring out which treatments are most effective at shrinking or eradicating tumors for which patients. DYD aims to capture information on how patients approach every aspect of their cancer journey—including dealing with side effects and overall well-being—so that patients can learn from similar patients about what might work best for them.
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. Donate Your Data now.
Sarah Stanley is Associate Editor at Cancer Commons, where she helps translate cancer research into useful insights for patients.