Nov 30

Olin Hyde noted a nifty survey on patient control of electronic health record information the other day. But he interpreted it in a dour way, at least for my own worldview of openness. Here’s his tweet:

The article talks about how patients want control over the privacy of their data, so I can see why this is an easy interpretation to make. You’re a patient, someone tells you how much crap is happening with your data, and your gut reaction is to protect it. Makes sense.

But actually I believe it’s the opposite conclusion. I think this study virtually guarantees an open data commons built of health records. 

Because, you see, the very thing that we need to build a health data commons is patient control of health data.

Right now, patients don’t control. Large institutions do. Large companies do. Large hospitals do. So we can’t control our privacy, whether to keep something private forever, or to donate it to science.

But if we get the control that this study says we want, then at least some of us will make that donation. And it doesn’t take very many people making the choice to contribute to create a glorious resource.

Take Wikipedia. It’s remarkable how few people, as a function of total Wikipedia users, actually make Wikipedia. From the Quora page on Wikipedia contributions:

According to Wikimedia’s estimates, the larger Wikipedias (e.g. English, German, French) have 0.02-0.03% of visitors actively contribute. 

Wikipedia has roughly 100,000 active monthly contributors, with about 40,000 of those on the English version. It looks like about 10% of users (~4000 for English) are very active (defined as 100+ edits per month).

If you don’t want to log into Quora, you can see the graphs on which these conclusions are based (Core Editors Are Small and WM Articles V Contributions). But .03%? That’s tiny. I bet we can get .03% of all patients to donate their health records to research. Hell, Buzzfeed is built on the bet that we could get .03% of the population to watch a GIF of a cat chasing a laser.

At the current population of the United States (311,591,917), .03% nets us 93,477 people. That’s a massive clinical research cohort - more than 10x bigger than Framingham. My instinct is that we’ll do better than that, but even if we don’t, that’s a big enough number to change the game of mathematical health modeling.

You see, the secret sauce of the commons is asymmetry. A small number of people making an unreasonable choice, a choice to share, to be digitally naked - that’s all it takes. But if we don’t control the privacy over our own health records, that small number will never get the chance to make that choice.

So I view this study as unmitigated Good News. It means that people are going to get more and more pissed that they don’t have control, and that makes it more and more likely that they get control. Patient empowerment is the first step on the road to open data. It doesn’t take all of us. It just takes all of some of us.