In a model for medical innovations, patients have the power

[WillowJ]

Seattle's Sage Bionetworks seeks a drug-discovery revolution

When Stephen Friend formed the nonprofit Sage Bionetworks, his aim was nothing short of revolutionizing the way drug discovery is done so patients don't have to wait for help.

SPRING 2010. A young man steps to a microphone in a hotel ballroom. A sea of brainiac biologists and fancy-pants pharma execs sit before him.

"I'm a 22-year-old college dropout," he begins.

Then he proceeds to show the roomful of egos how medicine's got it all wrong.

It's wrong in the way patients are viewed. Wrong in the way drugs are developed. Wrong in the way research is conducted. Wrong.

Well, [Sommer] said it much better than that.

"If patients knew the secrecy in academia, they would throw up," Friend says...

After eight years in academia, eight in biotech and eight in Big Pharma, Friend opted for a change. "Each of these places thinks they're going to cure diseases by themselves," he says. Ha!

the article discusses systems biology, personalized medicine, and an "open-source movement" for biology, which will require a profound restructuring of the entire scientific world.

though some scientists have signed on, others are a harder sell.

Surprisingly, perhaps, the patent-chasing private sector is willing to give sharing a try. Friend says a number of pharma companies have signed on for specific projects. The way pharma sees it, nine out of 10 drug trials fail anyway, Friend says. "If it was eight out of 10, they'd double their profitability." Turns out academics are a harder sell. There are turf issues. Egos. And questions of funding, too, since everyone's competing for a limited pool. You don't win the big grants for being big-hearted....

Friend says these researchers will just be left behind. He believes that if scientists had earlier access to others' data, they could connect the dots with their own research. And it's just as important to share things that don't work. No sense in repeating that experiment.

Patients might not know it yet, but they actually have the real power, Friend believes. Sage is developing tools to allow patients to be stewards of their own data, whether it's at their doctors' office or in pharma's hands. The Josh Sommerses of the world will one day be able to say, you want me to join your research? Then share your data.

If patients refuse to play with the nonsharers . . . it's a whole new world.