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Comment by kyro | Hacker News Reader

Good on you, man.

I'm in medical school currently and the emphasis on locking down patient data is one of the most frustrating things to see. I'm convinced that it's a policy that everyone knows has little benefit and yet pushes for ethical brownie points. What's to be gained from freeing up the data far, far exceeds what could potentially be lost.

Even freeing up anonymized patient data seems to be met with opposition. Imagine the data analysis that can be done on millions and millions of patient cases and the clinical/treatment models that can emerge as a result.

Medicine right now is an old, stiff wooden board bending under the weight of technological innovation. Something's going to snap and I'm looking forward to see it happen.

I really support what you're doing, and if you want design help, my email is in my profile. Best of luck!

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"Even freeing up anonymized patient data seems to be met with opposition."

Unfortunately, statistically, "anonymous patient data" is an oxymoron. Any useful amount of patient data contain enough information to deanonymize it to a great extent, and in conjunction with other data often fully deanonymize.

http://33bits.org/2010/06/21/myths-and-fallacies-of-personal...

Quite true, but that does take effort. Whatever we do we're going to have to make a tradeoff between saving lives and preserving privacy at some point.

>> I'm in medical school currently and the emphasis on locking down patient data is one of the most frustrating things to see.

Is this meant hyperbolic? Confidentiality is probably one of the most important parts of a doctor-patient-relationship. Even "statistical" information about people's health/illnesses should in my opinion only be used after prior written consent.

The potential amount of damage to reputation, social life or life (depending on circumstances) of leaked/stolen medical records/patient data redeem every effort to keep them as closely guarded as possible, in my opinion.

Story from a friend working at a manage healthcare company in the early 1990s.

The state published a set of anonymized data on patient care stays associated with workman's comp.

The company wrote code to correlate data from these scrubbed records (age, sex, treatment dates) with data it had, to identify the patients.

These days, much of healthcare business is oriented around data flows -- pharmaceutical dispensing machines which double as patient-data-and-dosing information capture devices. The drugs vendor is willing to sell the drugs at or near cost simply to capture the datastream and sell it back to the pharmaceutical companies.

There's very, very good reason to view EMR with strong suspicion.

Kyro, your Hackermed was a nice attempt to bring together those interested in health-related innovation.

As to the OP, there's still a room to improve existing software technologies. And there is still a lack of consensus about best ways for improving handoff processes: http://www.ingentaconnect.com/content/jcaho/jcjqs/2010/00000...

Thanks very much!

Large scale analysis of (anonymous) patient information will lead to many breakthroughs. Hopefully, one day we will get there.

Ben Goldacre has a good blog post about "When Ethics Committees Kill"

(http://www.badscience.net/2011/03/when-ethics-committees-kil...)

Actually practice fusion seems to be making use of anonymous patient data.

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