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
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.
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
Let me know what you think!