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Wednesday, May 2, 2012

Lives not Livelihoods in Meaningful Use

If I were to die tomorrow and all that was left of me was my right hand, you would know two very important things about me.  You would know that I am a painter and I was a writer.  No matter how often I scrub my fingers the patina of paint discolors my cuticles and the cracks in my skin.  And though I left a childhood of writing lines 30 years behind me, I still have the finger callus of a longhand writer. 

If I were to die tomorrow, and all that was left of me were these words that I write.  You would know I learned how to type on a typewriter.  The two spaces behind each line is a tell.  I learned to type in an age where uniformly sized keys created unevenly spaced letters.  Hence two spaces were necessary to signify the end of a sentence.

I do not need to do that anymore.

Yet, I persist.  I have tried and tried to change my ways and press the bar only once, but I fail.  I have fallen into the siren sway of habit.  My muscle memory runs ahead of my mind and leaves my thoughts to rest two spaces behind the last.

Today while working on my public comments for Meaningful Use Stage 2, I saw once again that the American Hospital Association has decided to promote livelihoods over life itself.  They do not support our rallying cry that patient data access must be part of Meaningful Use and it must be timely.  In stage one Meaningful Use the rule called for access within 4 days of request.  As we head toward defining stage 2 many patient advocates are asking for data access within 24 hours or real-time.  The AHA (American Hospital Association) is asking us to go back in time and accept data access 30 days after a care episode as was codified under HIPAA.

AHA is stuck two spaces behind us. 

 This organization is living in a world of 30 years ago, consisting of typed reports and hands that are marked with the callus of a scribe.

Their very insistence of a return to the rules of yesteryear demonstrates the dangerous path of habit itself.  Once you begin to design systems without patient inclusion it becomes habit to leave us out.   Habit tends to settle like concrete, pliable only in it early stages and hard as rock as it cures.  Like concrete, habit crumbles in time, but often it takes decades or jackhammers to remove it.

I urge those who are in a position to create the final rule of Stage 2 Meaningful Use to be brave and leap beyond a past care model that left patients out and embrace a new tomorrow of patient inclusion.

I urge everyone to publicly comment before May 7, 2012.  Please send a message strong and clear that we are all patients in the end and we deserve to see our own information.  Do it for the ones who died due to simple errors hidden within closed records or comment for the children yet to come who will live in a different tomorrow.  They will not comprehend an education system that creates a writer’s callus. They will expect timely information.

You are setting the concrete upon which these children shall tread.  You decide.  Shall they lead the world or shall they walk two steps behind? 


  1. Awesome, as always, Regina. I, too, have submitted comments today and told the story of what I went through two months ago when I lost my grandmother. It's just not okay that we don't have access to things and with systems that don't speak to each other, something has to be done. Thanks for pointing this out for everyone.

  2. GOOD LORD, Regina! So powerful! Just amazing!

  3. You are amazing. Thank you so much for all the work you do. You are making a difference.

  4. The decline in medical ethics in America is appalling, yet largely invisible to the public. It's not just the hospitals, it's the doctors who admit patients to them - often just to protect themselves from perceived legal exposure. And healthcare reform will do little to change that. As Dr. Victor Montori of the Mayo Clinic puts it, "We need a revolution". Thanks for doing your part so eloquently.

  5. Thank You for your support of the patient voice. Kathy it was such an honor to include your story visually in this post. Dave thank you for linking it on the post. Thank you Alicia and Bebe for your kind words. John, Yes, Victor is right we need a revolution in thinking and hopeful we can do our part as patients to guide that thinking in the right direction.

  6. The hospital acquired infection rate has gone form 1 in 10 to 1 in 9.

    The entire health care industry in the US is beyond redemption.

  7. So proud of the work you're doing, Regina. Those of us who have suffered repeatedly in the hands of those who are sworn to do no harm are standing with you!

  8. This is a phenomenal post. You are doing incredible work that will help change health for not hundreds, but millions.

    Two spaces behind indeed. Maybe two light years behind where the rest of us are headed.

    Thank you,

  9. I posted a response as requested. However I did not totally agree. Yes, it is important to have a medical record, but impractical in most cases within four days.. If a record is needed immediately a paient should let the doctor's office know. They can expedite it for you since the doctor must sign off on the hospital record to be sure it is complete.. In most cases if the patient is going to see another physician for a second opinion or as a new treating MD, the patient can contact the new doctor and he can determine how fast he needs the records,, contact the old doctor. He also will know exactly what he wants and needs from the previous hospitalizaton. I posit it is a bit inappropriate and overkill to require this be legislated into the Federal Register, Obama Care and/or Meaningful Use. This is just one more reason MDs are not supporting Obamacare. Imagine of the MD has ten of these to do on one day....not an unrealistic proposition. Totally disagree with Matt Holt on this one.

  10. Well said Regina!