Health Data Rights

There was a time when health information was merely a collection of facts about you. You visited a doctor on the 17th because of a sore throat.  You had your appendix removed when you were a grade-schooler.

Now, in the 21st century, information is increasingly used to drive business value.  In a sense, information is becoming an asset.  And as many of us have seen with the antics on Wall Street, any asset can be abused for personal and possibly unethical gain.  Legislative bodies around the globe have expended a lot of energy on regulating the use and access of health data, such as the well-known HIPAA legislation (Health Insurance Portability and Accountability Act) here in the United States.  But despite the existence of this law, we're still facing some huge hurdles. 

First, HIPAA doesn't handle all problems related to health data.  For example, new regulations need to be devised to fully protect individuals from exploitation of information stored their DNA sequences.  Just a generation ago, no one could possibly know if you held a genetic predisposition to, just as an example, renal failure.  Now, simple and quick tests exist to identify key genetic markers for such a predisposition.  Could this data be used to deny or charge exorbitant rates for medical coverage?  Life insurance? A job?

Second, health care (at least in the USA) is decidedly low-tech, despite much pushing and prodding from our government.  Overall, the health care industry (and doctors in particular) has been reluctant to cultivate the power of the Internet to deliver information to anyone, anywhere.  My wife was employed at one of the best hospitals in the southeast United States (Vanderbilt Children's Hospital), where they needed large, redundant administrative staff to transcribe every thing about a patient's visit into their medical systems.  Doctors refused to do it themselves (though younger doctors were noticeably less reluctant to use computers) and many important computerized medical devices (think of MRIs, CAT scanners, electrocardiograms, etc.) offered no integration at all.  Huge amounts of floor space are devoted to maintaining so much paper medical information that it could literally be measured in tons better than pages.

Whereas much of the recovery from recessions during the early years of both the Clinton and Bush II administrations were attributed to huge improvements in information technology, none of that has matured yet for the health care industry.  In fact, almost every business ecosystem in the United States has been revolutionized by information technology except health care!  The system is, in effect, still a sick care system rather than a real health care system.  And efforts to computerize it are much the same as data processing activities of the 1960's - taking easy, repeatable actions and having a machine do them at high speed.  But the real promise of IT has yet to be realized in health care.  Imagine a time when a data mining application could show the slow and steady development of a behaviorally-influenced disease, like Type 2 Diabetes or coronary disease or IBS, and provide plenty of early warning signs plus knowledge and support and tracking for convalescence and recovery.  As SQL Server professionals, we know that good data mining can reveal that sort of issue and one thousand more.  Conversely, consider the situation where an individual sees three different doctors for the same problem.  How do you know that you're getting personalized and relevant information instead of the latest prescription drug brought in by the pharmaceutical representative?  I can tell you in my own experience with heart problems (first documented here) that I'd seen over a dozen doctors within five years time, and yet only the very latest doctor of the whole bunch pointed out the correlation between GERD, sleep apnea, and heart problems.

Add to this the fact that even those medical institutions that are using medical IT systems are firmly stuck in the 20th century.  I've seen a lot of medical IT systems and even the very best of them are still clunky, lame client-server applications that are very ineffective at modeling the business.  Many of them attempt to implement anachronistic and overweening standards like HL7, which is essentially analogous to commuting to your job in an 18-wheeler tractor-trailer.

I've decided to get ahead of this curve and I'm encouraging you to do the same.  Maybe it's just my time as a community organizer for PASS, but my first inclination is to look for like-minded individuals who support the same goals and aspirations I do.  I suggest that you start with the Health Data Rights organization at http://www.healthdatarights.org/ - join the movement to own and control your own health data and make it work for your betterment.  Other places to begin your activism include http://www.google.com/health/ and Tim O'Reilly's wonderful blog about Gov2.0 at http://radar.oreilly.com/2009/08/what-does-government-20-mean-to-you.html. 

Let me know what you think!

-Kevin