“. . . Math in this day and age is like a giant set of power tools that we’re leaving on the floor, not plugged in in health, while we use hand saws.”-- John Wilbanks, VP of Science, Creative Commons
As is probably the case with most people, I’m a fan of efforts to prevent pain and suffering. I heard a good story about this recently: an October, 2012 TEDTalk called, “Let’s Pool Our Medical Data” by John Wilbanks, VP of Science at Creative Commons. Wilbanks runs the Science Commons project. And as I was listening to the talk I thought about the amazing potential for Business Discovery to transform the way clinical research is conducted—to uncover insights that lead to more effective treatments and cures for more sicknesses.
In this TEDtalk, Wilbanks points out that despite gigantic changes in technology during the last 70 years, our methodology for clinical studies hasn’t changed all that much. We have better statistics, to be sure. But still, in 2008 there were more than 12.7 million new cases of cancer worldwide—and 7.6 million deaths from the disease. That’s 21,000 cancer deaths a day.*
Why isn’t clinical research making a bigger impact? In Wilbanks’ view, it’s because of the informed consent laws we as a society created to protect us from harm. The side effect—the unintended consequence—of the informed consent process is that it inhibits innovation.
Wilbanks illuminated two conditions that erode the effectiveness of today’s the clinical research system (at least in the U.S.):
- Data silos. The data the medical research community collects during clinical trials is put to very limited use due to the restrictions in the informed consent process. Data that the medical community collects for prostate cancer, for example, or Alzheimer’s, can’t be shared, networked, integrated, or used by people who aren’t credentialed.
- Small data sets. The number of people who participate in a phase 3 clinical trial (1,000 to 3,000 people) is, while statistically significant, not big enough to enable the researchers to break down the data into smaller groups to identify variations in the trial participants’ genotypes, environment, or choices.
His proposal? We build a data commons – a public good we build out of private goods that uses standardized legal tools and standardized technologies. It’s something we as a society would build together because we think it’s important. In this commons, people would volunteer to share their medical information: genome data, test results, etc., as well as information about their choices (e.g., what they eat) and their environment.
Wilbanks has started a self-contributed clinical research study that is unlimited in scope and global in participation. Individuals older than 14 can go through an online informed consent process and then upload their data. The idea is that mathematicians will apply their skills to this Big Data research, mapping the data from the science commons against smaller cohorts from clinical trials.
For this science commons to work, not everyone has to participate; with 7 billion people in the world, only a very small percentage has to participate to create statistically significant results. Wilbanks’ goal for the science commons is 100,000 people in the first year and 1 million in the first five years. He is optimistic: “I live in a web world where when you share things, beautiful stuff happens, not bad stuff. . . People like to share, if you give them the opportunity and the choice.”
Imagine if this exploration were open to not just data scientists skilled in using statistics packages—but physicians, nurses, and others. Picture them, with their expertise in the hospital and with patients, applying Business Discovery software to a Big Data problem and being able to easily explore the vastness of millions of records as they scouted out associations, patterns, and outliers in the data. Imagine if, for example, they were able to identify a behavior or environmental factor that tends has a strong correlation with a particular sickness—but not when a particular drug is used. It could be transformative for all of humankind; I’m keeping an eye on this guy’s project.
* See the American Cancer Society’s “Global Cancer Facts & Figures, 2nd Edition,” published in 2011.