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Although fully organized patient-run trials are still few and far between, patients are taking a more active role in clinical research. Now, more than ever before, patients have access to scientific knowledge as it’s reported, and advocate communities are flourishing, thanks to the wide-ranging, faster, and more accurate communication provided by the Internet. This increasing patient activism, and an accompanying willingness to share personal stories, has resulted in a veritable deluge of patient data.
“When you have gigabytes of data, perhaps hundreds of gigabytes, for each patient, that’s more data than has existed in all clinical trials combined up until a couple of years ago,” says Marty Tenenbaum, who in 2010 founded Cancer Commons, a database that collates real-time patient data and up-to-the-moment basic medical ...
