Information Wants to be Shared focusses on business models for information content provision. But the principles behind it, that information is more valuable if it is exchanged freely, obviously extend to many other matters. One such matter is health-related information.
John Wilbanks is a crusader that has taken the issue of health sharing on. As is often the case, his crusade is well described by a TED talk. This one is very good and I commend it to you.
Wilbanks begins with the interesting evolution of how medical data was collected from individuals. It involves an amazing amount of self-sacrifice that is an interesting story in of itself. But what appears to be the case is that alongside that evolution was a particular institutional structure, “informed consent,” that many of us take to heart. The issue is who owns our medical data. It was the issue at the heart of the Henrietta Lacks story, but that story completely obscures the missed opportunities that Wilbanks wants to emphasise. His point is that when we ask people to participate in trials now, to obtain agreement researchers offer to protect people’s privacy and, in the process, to limit the ability for that data to be shared. However, as he convincingly argues, there are many opportunities for knowledge that can be missed by restricting the pooling of data that could be facilitated by widespread sharing. In particular, researchers too easily agree to restrictions on sharing as it is not a short-term issue but it bites science back in the long-term. And he hypothesises that people would find it acceptable to have their data shared and, in fact, would trade off potential privacy risks for that. What is great, by the way, is that he doesn’t just assert this but frames it as a hypothesis and one that he wants to build evidence on. That is quite freshing.
And his proposal …
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.”
The goal is to create a platform for sharing of medical data. The heart of it is a change in the standard form of agreements that researchers and subjects enter into. You can read more about it and, indeed, participate in the commons here.
I like the way he is thinking here. It is a good combination of Al Roth’s principles of market design and Dan Bricklin’s Cornucopia of the Commons. From Roth we have the basic notion that, in order to be useful, there have to be lots of participants so it pays to make participation as easy as possible. We also have the notion safety which is assurances as to how data will be used and controlled. From Bricklin, we have the notion that the entire venture does not require ‘all in’ participation or even complete participation by individuals and the frame that people are made to feel good about what they contribute rather than guilty about what they do not.
My impression is that this is an excellent start but I worry that it is missing a key ingredient: apart from feeling good about themselves, what do people who provide their health data get from this? Bricklin has argued that when contributing is a by-product of self-interested use, it is very powerful. Here I think there is opportunity for that. Indeed, Wilbrooks mentions The Eatery app that is allowing one company to gather very useful dietary information from users. I have written about that app before. The point is that people provide data on their diets because they are getting something immediately — in this case, a combination of game, memory and affirmation. I can imagine that uploaded health data could be reformatted and made manipulable by individuals to learn more about themselves even before it is pooled with others. There are many hurdles to go through to see a vision like this come good but a little self-interest wouldn’t go astray.