Unless you’ve been living under a rock (or simply don’t care about the topic–which is much more likely), you’ve heard a lot about electronic health/medical records, sharing of healthcare information, and how this panacea will dramatically increase the quality, and decrease the cost, of healthcare. There’s a big problem, however. Hardly anyone is doing it (yet), which begs the question: Why is this so hard?
We could go down the route of talking about the lack of inter-connected RHIOs, HIEs, and other IT-related alphabet-soup short-hand names but I think there’s a deeper problem that’s keeping the public at large from demanding such sweeping changes (and funding them). One word: Privacy.
We want our cardiologist to be able to get our electronic health record directly from our primary care physician but we’re simply not comfortable with a few, or perhaps just one, entity housing all of our healthcare data (or at least facilitating the dissemination of that data). We’re afraid that Big Brother is watching and will do evil things with our data (without our knowledge, of course) if we don’t control it.
Tim O’Reilly makes what I think is one of the best points about what we’re actually afraid of when it comes to our healthcare data:
Technology is taking us a direction where more and more is known about usâ€¦It’s hard to be completely anonymized. I think we need a complete fresh look at what tradeoffs we’re making and why. A good example is health care privacy. It’s true that there are some diseases that still have stigmas around them, but our need for privacy is mostly about adverse selection from insurance companies. The problem we need to solve is adverse selection due to pre-existing conditions, not to treat the info like it’s toxic waste. If we look at the benefits of using the information – they are incredible.
Is it possible that we’ve been asking the wrong question when it comes to privacy? I think so, perhaps. The root problem is what people may do with the data, not the fact that they have access to the data in the first place. While I’m not a big fan of governmental regulation, this is something that can be controlled by regulation and could help spur along additional data-sharing advancements.
So, if we could solve problems such as adverse selection (and a host of others), would you be more willing to have your healthcare data readily available to those that need it in order to provide you with better quality and lower cost care?
(PS: For those of you still concerned with the technical interoperability issues, one needs only look at the financial services industry to see that this problem can be overcome. Need an example? Go to the ATM of a bank where you don’t have an account and withdraw some money.)
(PPS: If you’d like some more information about privacy–especially online privacy–you can check out a research paper I wrote in graduate school entitled Online Privacy: A Global Perspective.)
UPDATE: Seth Godin makes a good point that privacy isn’t the real problem. Rather, being surprised by what is done with our data is.