The future of health research depends on more than bio data

Last week I spent a bit of time learning about the Quantified Self movement—a group I’ve been following from the shadows for a couple years now, but which I’d not really engaged with closely until recently. The group is an informal collection of self-trackers: people who use measurement and/or data collection as a means to deeper self understanding and to improve the quality of their lives. It’s a pretty neat group, and you’ll learn a lot just from perusing the blog.

The quantified self trend is one which I’ve come to think is the future of healthcare—data-driven research and self-improvement. What I find most compelling about some of the QS examples are the way in which otherwise irrelevant, mundane observations about one’s life can lead to sharp insights and improvements. Which is why I find a new project from John Wilbanks particularly interesting—as he describes it:

 The idea behind CtR is simple: make it easy for people who want to share data about themselves for scientific, medical, and health research to do so. It’s not centered on intellectual property, though it does touch on it. It’s more about privacy, and in particular, about making it possible for people to get informed about what is possible with their data and how beautiful research can emerge if enough genomes, enough biosamples, and enough other kinds of data can be shared and connected.

When we think about the future of scientific, medical and health research it’s easy to stop at the types of medical data we collect today—blood pressure, genomes, drugs consumed, etc.—but the QS movement would suggest we could learn more by going farther into the mundane and unexpected sources of data.

Which brings me to Flu Trends, an indicator for the incidence of flu in a given area based on search behavior. It can sometimes feel, especially in some privacy circles I move in, like an overused example, but an important one. Flu Trends speaks to an issue at the core of the change we need to see in how we think about privacy—the idea that data must be used for the purpose for which it was collected, otherwise called purpose specification.

In a talk I gave at last year’s OECD roundtable on the economics of personal data I emphasized this point: improving the world in the 21st century is going to depend at least in part on drawing intelligence from vast amounts of loosely collected information. More often than not, surprisingly useful intelligence will come from the most unexpected sources of information—and we need a flexible enough policy environment to support the exploration of those sources.

 

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