When researchers gathered together to talk about how to foster openness in biology and medical research, one of the most trenchant and moving presentations came from a 22-year-old college dropout.
The speaker, Josh Sommer, left college after being diagnosed with a rare type of brain tumor, called a chordoma, and found “information locked inside labs and not being utilized” to help patients. He created a patient group, the Chordoma Foundation, that helped recruit researchers to work on chordoma and to share data. Four years into a disease with a seven-year prognosis, Sommer says the work is giving him hope. One of his hopes is for a big cultural change in science that will help scientists cure diseases. His speech is below, and you should watch the whole thing. It is heartbreaking.

Patient groups like the Chordoma Foundation are one of the forces pushing academics and drug companies to start sharing more data in the hopes of speeding up medical innovation. The Cystic Fibrosis Foundation has revolutionized the way drugs for rare diseases are developed and the Multiple Myeloma Research Foundation has helped change the way that blood cancer is treated. Gary Gilliland, the head of cancer research at Merck, did some of his important work on blood malignancies called myeloproliferative disorders with the help of the MPD Foundation, which insisted researchers share data. (For more on those three examples, see this Forbes article from 2008.)
Stephen Friend, whose nonprofit organized the the Sage Congress (click here to see the presentations), says the push toward making data more widely available is being driven by patients. He also thinks this kind of approach, epitomized by the Web site PatientsLikeMe, could transform the way side effects are tracked. It would be a lot easier to understand what goes wrong with a drug if people who take it were pooling and sharing their data. “I think the physician as the priest who knows things that others don’t know has got to go away,” he says.