The Other Upside to Electronic Health Records
For those readers who may've seen my op-ed in Wednesday's NYTimes on electronic health records, there's one upside that I didn't mention.
The predominant argument for EHRs - including mine - is that they'll make for better individual health care and, system-wide, can save lives and money. What's more, if a national standard for EHRs emerges, such as WorldVista, the system I wrote about, then the US health care system could in fact be faster, more efficient, and more connected as well.
All that is true, and it is, to my mind, reason enough to spur the government (via CMS or some other HHS agency or program) to promote the adoption of EHRs as soon as possible â€“ like now.
But there's one more great side effect of EHRs - the data.
If the US health care system was to move to nationwide electronic records, and if those records were largely standardized and exportable, there would be an unprecedented reservoir of health data for epidemiologists and researchers. The benefits wouldn't just be statistical or demographic - who's dying when of what, etc. Think bigger: With information on millions of Americans health histories, we could ascertain what sort of treatments work - and which don't. We could see what the optimal time for interventions is, and when is too late or too early. We could see where in the country we are doing things right, and where things are going wrong (who knows - maybe Mississippi has some health secrets that aren't turning up in the rudimentary record-keeping we now have).
If you're wondering about privacy concerns, I have two answers. First, the cheeky one: Get over it. I think our national obsession with privacy, especially on medical histories, is overblown and self-defeating. Other countries don't worry nearly as much about privacy issues, they have set up remarkably rich electronic health systems, and they're already pulling out reams of great data that help them treat their citizens better. (Want to know whether autism is related to vaccinations? It's not - Sweden proved that already, thanks to their swell record-keeping.) And that's not even counting the upside once genetic information starts dropping into the system.
Second, the pragmatic answer: Stop your worrying. We have plenty of laws that provide for privacy of health records (HIPAA, etc), and if anything they're too strict about the stuff. What's more, the data I'm talking about can be completely anonymized. We don't care what's wrong with Joe Brown from the Upper West Side â€“ we care about what's wrong with the Upper West Side.
Right now, all that data is just slipping away, and researchers have to look to other countries - countries that are smaller, less diverse, and differently structured - and awkwardly extrapolate to the US. I talk to researchers about this - especially data wonks - and at first they get so excited about the potential, about all the studies they could do, all the questions they could answer. But then they wake up - they're resigned to getting those answers elsewhere, or forgoing them, because we simply don't have a mechanism to turn what your doctor does for you into data that can be combined with what everyone else's doctor is doing for them.
The fact is, the US has the best medical care in the world despite itself. We don't really know what we're doing, or what works, in any really scientific way. Sure, we have studies that show - under very controlled circumstances - what sort of treatments work. These demonstate statistically significant results under laboratory conditions. But in practice? In the real world of clinical practice (small scale)? In the real world of health care practice (large scale)? It's a total crapshoot. In the worst case, that's partly why we have these massive after-the-fact pharmaceutical recalls; because we (they) didn't really know what was going to happen once the real world scenario started to play out. The data simply isn't available.
This is the real bonanza of electronic health records in the US. The data become available. But let's be honest: The fact is, it's an argument that won't change anything, won't ever get anything done, because there's no personal benefit. It's all in the abstract. But gee, it'd be great to get there...
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