Free Beer Party Blog

In the past few days I’ve noticed a spike in the number of blog posts, announcements, and commentary on health care data security.  The focus is on identity management, data access controls, and accountability.

This is disturbing.  I’ll make an educated guess that more harm is done to health care consumers due to lack of data, delays in getting data, failure to heed available data, and incorrect data.  In some cases it is a failure to communicate — in a timely manner, or at all — among health care providers.  In other cases it is a failure to communicate with the health care consumers, who then lack the information necessary to make good decisions about their own health and how to maintain or improve it.

The issue of communication among providers is well-trodden ground.  Interoperability among health information systems is an urgent need that, in my opinion, has been delayed due to re-thinking and re-invention more than a lack of mutual will or delays in needed standards.  Patients’ well-being is being sacrificed on the altar of perfection, when “good enough” is in-hand.

Lets personalize this: You and your family are being harmed.

There is a solution, though.  Get your own data, understand it, and make sure it is communicated among all of your health care providers.  Do the same for your family.  If a health care provider will not readily provide your data in a form that you can use, get in their face and demand it.  Read it.  Make sure you understand it.  Note corrections where you find errors, as you will probably find some.  Ask questions.  Look on-line, as there is plenty of information.  I urge caution, though, because there are plenty of mis-informed people who provide their mis-information on-line.  Above all, do not let those who are standing in the way of good enough health data sharing do you any more harm.

When I was young and curious about my own body, I was blessed by having a grandfather who was a physician.   All of my questions were answered, and there was nothing that was off-limits.  He hauled-out Grays Anatomy and helped me understand the drawings.  I also avidly browsed it then came to read, as I got older, his copies of the New England Journal of Medicine.

I particularly remember a time when he was doing some post-retirement consulting on occupational trauma.  He had x-rays of the injuries and, because I was curious, he taught me how to read them.  (Nowadays I get a lot of enjoyment out of AuntMinnie.com.)

By my teens, I had a fairly accurate understanding of what human bodies contained, what the various parts did and where they were, and what “normal” and “abnormal” was.  My vocabulary included medical terminology.  Reading news and science magazine articles, as life science and medicine advanced, was easy.

While I never had much interest in becoming a physician, my career naturally gravitated to health care.  In particular, my burgeoning interest in information technology found it to be fertile ground.

At first my focus was on computers, programming, and computer science.  Gradually, though, I become intensely committed to end-results: improving the business of health care and the delivery of care to patients.  For a long time it was in that order: business first, care second.

An epiphany came when I finally realized that the business of health care was actually in the way of delivering care.  We can only improve the business if we first improve the outcomes and efficiency of care.  And outcomes are driven by each patients’ personal commitment — responsibility, accountability, and actions for one’s own wellness plus enrolling one’s care providers in that commitment.  That starts with my own commitment.

Another epiphany came when family members had illnesses.  They lacked a base of knowledge about their bodies and what was wrong.  Their experience of disease was remarkably different than mine, especially more fearful.  They tended to avoid doctors, rely on old wives tales and unproven folk remedies, and seek the comforts that alternative medicine practitioners were eager to provide.  The results were unfortunate, over time.  It was when I realized that all this was enabled by a lack of understanding, and that available information was hard to understand, that I “got it”.  My own upbringing, experiences, and understandings were fairly unusual.

I am now at a point in my life where I may be able to help close the commitment and the knowledge gap.  It’s something about which I can be passionate and engaged.  That’s the start of a journey, not the end of it.