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.