John Wilbanks arrives on stage with some bad news, some good news and a task. But first, he says, let’s be honest. We all get sick. We don’t always die, but quite reasonably we do try to find out what’s going on.
In the late 1800s, Dr. Carlos Finlay had a hypothesis. He thought yellow fever was not transmitted by chance or dirty clothes but by mosquitoes. Laughed at as the Mosquito Man, his theory was vindicated some 20 years later. How? By volunteers who moved to Cuba, lived in tents and agreed to be voluntarily infected with the disease. Knowing full well that they might die as a result of their action, the volunteers knew what they signed up for thanks to a document known as informed consent. “We should be very proud of this as a society,” Wilbanks says. Informing participants “makes us different from the Nazis.”
But times have changed, and informed consent has become a millstone around the neck of medical advancement. “What we think of as health are now interactions of choices and environment, and clinical methods are not good at studying that,” he says. “Those are based on person to person interaction.” And now we live in a networked world.
As such, the data collected on diseases such as prostate cancer or Alzheimer’s descends into a silo from which it is impossible to extract. “It cannot be networked, it cannot be integrated, it cannot be used by people who aren’t credentialed,” says Wilbank. That means a physicist couldn’t use it to try out a good idea. A computer scientist would have to get credentials to use the data to test a hypothesis. “Computer scientists aren’t patient,” he says. “They don’t file paperwork.” The inference: what lateral thinking are we missing through this well-intended departmentalization? “The tool to protect us from harm is protecting us from innovation.”
It’s a life-threatening problem. 45% of men in the United States develop cancer; 38% of women. 1 in 4 men die; 1 in 5 women. 1,500 people a day die from cancer while the U.S. spends $226 billion on the disease each year. Wilbanks has first-hand knowledge: his sister is a cancer survivor, as is his mother-in-law. “Cancer sucks,” he says bluntly. And let’s be honest, privacy leaves the room when cancer enters. So when Wilbanks shares with survivors that the tool designed to protect them is in fact preventing their data from being put toward the development of a potential cure, “the reaction is not ‘thank you, God, for protecting my privacy,'” he says. “It’s outrage that we have this information and we can’t use it.”
But there’s some good news. Our world includes “digital exhaust,” a phenomenon he thinks of as the dust trail kicked up by his son running in the woods. That means we can track our selves on our own. He shows an iPhone app, Eatery, through which we can monitor and share details of the food we eat.
Nowadays we can get our genes read; before too long that’ll be our whole genome. Wilbanks shares details of his own scan. He carries a 32% risk of prostate cancer and 14% risk of Alzheimer’s. When he got his report, doctors advised him not to tell anyone. “Will that help anyone cure me?” he asked. “No one could tell me yes. I live in a web world where when you share things beautiful things happen.”
So he didn’t stop there. He got his bloodwork back and started to share it. “I have bad cholesterol,” he says, and bad liver results (the result, he claims, of a good, wine-filled dinner party the night before the test). But, he adds, “look at how non-computable the information is!” Indeed, the printout he throws up onscreem looks like a throwback to the days of the first dot-matrix printers.
Wilbanks’ proposal is a medical commons, a way for people to gather this medical data and share it freely. People are neurotic about privacy and keeping control of their data. “Some of us like to share as control.” And, he believes we live in an age where people agree with him. He mentions a study run at Vanderbilt University in Tennessee.”It’s not the most science positive state in America,” he say. “Only 5% wanted out. People like to share if given the opportunity and choice.” And not using this data to understand health issues through mathematic analysis “is like having a giant set of power tools but leaving them not plugged in while using hand saws.”
“This is the world’s first fully digital, self-contributed, unlimited in scope, global in participation, ethically approved clinical study,” he says. It’s a way to reach behind and grab that dust, to extract medical records and donate them, to have them syndicated to mathematicians who’ll do big data research.” To sign up, all you have to be is over 14 years old, “willing to sign a contract to say you’re not going to be jerk. Oh, you have to solve a Captcha too.” That’s it. “If you don’t like those terms, don’t come in.”
Here’s the other thing about systems: it doesn’t take that many people to make big advances. “It didn’t take that many to make or keep up Wikipedia,” he says. “We need a small number of unreasonable people working together.” And let’s move on from using the word “patient.” “I don’t like being patient when systems are broken, and healthcare is broken. I’m not talking about politics but the way scientists approach healthcare. I don’t want to be patient.”
Now for his task. “Try when you get home to get your data,” he challenged. “You’ll be shocked, offended, outraged at how hard to get it it is.” So try, and share it if you feel like it. He’s looking forward to seeing how many unreasonable people will join him. “After all,” he concludes: “It doesn’t take all of us. It takes all of some of us.”
Photos: James Duncan Davidson