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Kevin Kline

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

Published Friday, September 25, 2009 6:30 PM by KKline
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Jimmy May said:

HL7 may be antiquated, but a friend who works for a company trying to coordinate standards states this is a significant frustration for all manner of providers from physicians to hospitals to insurance companies.  Even with "stimulus" money available, orgs are reluctant to invest time in immature systems.  However, as you suggest, momentum is gaining.

Microsoft is doing its part.  Health Vault is here:  www.healthvault.com.  MS Amalga is  healh care information integration initiative: www.microsoft.com/amalga.  Amalga "provides a single point for unified access to the wealth of information present in a healthcare organization".

September 27, 2009 8:33 PM
 

Ranga Narasimhan said:

I strongly support the idea of healthdatarights. We do server health cheacks and trend analysis for hardware! But, have we got any reports with graphs on our health ? A used car dealer can get our complete credit history with few mouse clicks, but if we are in a emergency room, the doctors have no idea of our health history!

September 29, 2009 10:41 AM
 

KKline said:

Great comments, Jimmy and Ranga.

I think one of the things that prompted me to write this post is this - have you ever tried to ask your US doctor for all of your medical records?  There's about a 95% chance that they will refuse and, according to the current law, that's completely within their rights.

It seems to me that we, the consumer and subject of those records, should be able to see our own information.

Thanks,

-Kev

September 30, 2009 12:22 PM
 

Phillip E. Rosen said:

Hi Kevin,

I am an SQL Server Newbie and a retired U. S. Marine who works for the VA accessing SQL data cubes from the VA HDR and other data repositories that are located on the VA enterprise network.

I respect your years of IT/SQL knowledge however I disagree with your statement "health care (at least in the USA) is decidedly low-tech, despite much pushing and prodding from our government." because the VA uses an electronic health records system see the article here http://www.maryland.va.gov/publications/newsreleases/2009/04-06-09_NEJMpraisesVAelectronicHealthRecord.asp from the New England Journal of Medicine.

A quote from the article "VA hospitals have used electronic health records for more than a decade with dramatic associated improvements in clinical quality," the study's authors wrote.

The VA also has a Health Data Repository (HDR) "that stores clinically relevant data; serves as storage backbone of Veteran longitudinal health record; ensures clinical decisions made based on all clinical information available. "Access the "OMB Exhibit 300 (Planning/Acquisition) Redaction - 2010 (Form) Health Data Repository - 2010 (Item)" http://www.va.gov/EXHIBIT300/docs/15HDR.pdf, it takes a few moments to load please be patient.

An abstract for Sanford University about the HDR: http://clinicalinformatics.stanford.edu/scci_seminars/05_20_05.html

The community hospitals and healthcare networks/systems may not have what VA has build over many years however they can use VA as a model of how to/or not to build an enterprise ehealth record with a data repository that can be accessed from any VA hospital in the nation.

Best regards,

Phil

rosenpe at gmail.com

September 30, 2009 2:56 PM
 

KKline said:

Great information, Phillip!

I actually think that you're not disagreeing with me, but that you're pointing out one area of the medical industry that is leading the pack.  (Two other good examples are Kaiser Permanante and the Mayo clinic).

These links you've provided are a great indicator of what can be achieved in the wider health care industry. Sadly, most privately owned hospitals (though not all) are lagging badly.

Another challenge for the industry overall is occurring with those hospitals that are computerizing, but are doing it in a vacuum.  That means that their database systems are incompatible with anyone else.  That's why standards like HL7, as commenter Jimmy May points out, are extremely important no matter how old-fashioned.

Again, great input that helps provide a more complete picture of the entire healthcare ecosystem.

-Kev

September 30, 2009 3:35 PM
 

rosenpe said:

You're are right Kevin I used the wrong wording and thank you for sending the email to I enjoyed your correspondence.

Phil

October 1, 2009 1:02 PM

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About KKline

Kevin Kline is a well-known database industry expert, author, and speaker. Kevin is a long-time Microsoft MVP and was one of the founders of PASS, www.sqlpass.org.

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