Patient Power: Crowdsourcing in Cancer

Bonnie J. Addario at the HuffPost: “…Understanding how to manage and manipulate vast sums of medical data to improve research and treatments has become a top priority in the cancer enterprise. Researchers at the University of North Carolina Chapel Hill are using IBM’s Watson and its artificial intelligence computing power to great effect. Dr. Norman Sharpless told Charlie Rose from CBS’ 60 Minutes that Watson is reading tens of millions of medical papers weekly (8,000 new cancer research papers are published every day) and regularly scanning the web for new clinical trials most people, including researchers, are unaware of. The task is “essentially undoable” he said, for even the best, well-informed experts.

UNC’s effort is truly wonderful albeit a macro approach, less tailored and accessible only to certain medical centers. My experience tells me what the real problem is: How does a patient newly diagnosed with lung cancer, fragile and scared find the most relevant information without being overwhelmed and giving up? If the experts can’t easily find key data without Watson’s help, and Google’s first try turns up millions upon millions of semi-useful results, how do we build hope that there are good online answers for our patients?

We’ve thought about this a lot at the Addario Lung Cancer Foundation and figured out that the answer lies with the patients themselves. Why not crowdsource it with people who have lung cancer, their caregivers and family members?

So, we created the first-ever global Lung Cancer Patient Registry that simplifies the collection, management and distribution of critical health-related information – all in one place so that researchers and patients can easily access and find data specific to lung cancer patients.

This is a data-rich environment for those focusing solely on finding a cure for lung cancer. And it gives patients access to other patients to compare notes and generally feel safe sharing intimate details with their peers….(More)”