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Thursday, February 23, 2012

Warning! Patients Accessing Data Can be Habit Forming

"Why does a widowed artist focus on HIT (Health Information Technology)?

I have been asked a version of that question in virtually every forum where I speak. I can speak comfortably on the subject of end of life care, hospital hygiene, appreciation of the artistic view within medicine or the toys that teach us how to be patients. But no matter the subject, I will always stress the interpretation of health information technology as the most vital element to support patient engagement.

The core of my advocacy mission is to provide patients and caregivers access to read and contribute to their electronic health record in a real time fashion and thereby be a integral part of the health care team. I decided to focus my advocacy in this direction because I thought it was most likely the greatest opportunity to change the current paradigm of patient care.

With the passage of HITECH and implementation of Meaningful Use, a great sea of change flooded into medical practices throughout our country. This created a window of possibility to change our perception of the role of patient and caregivers within the arc of care.

We live most of our lives within a pattern of behavior formed long ago and are defined by our habits. Even our cognitive functions devolve into well worn pathways within the mind. But a few times within a life we find ourselves truly tossed about by waves of change. Perhaps the moment of change centers on a move to a new city, the birth of a child or the death of a loved one, regardless of the cause, the life changes are so extreme that we may break the bonds of habit. Why not have patient portals in the EMR? Why not involve patients in EMR workflow design?

It has not yet become a habit to leave us out.

We are in the eye of the storm and we can yet change the outcome. Health Information Technology is a pry bar or wedge that patients can use to open up healthcare silos and join the conversation.

Those are my thought as I prepare to speak today at HIMSS12.


  1. Go Regina!
    One of the nations' "finest medical institutions" took 3 months to correct a simple but significant error on a medical record that stated that the patient smoked 20 packs of cigarettes a day. (Fact: the patient began smoking at age 36 and averages just one pack per day.) This error could have been construed by a private insurance company as a reason to drop coverage for an untruth and placed the patient in real financial peril. Patients really do want to work with their medical team. Why treat us otherwise?

  2. Health Information Technology is the catalyst that allows us to push patient access and engagement forward. Data integrity, interoperability, MU and eRX allow us to reduce errors, improve communication and " connect" patient and providers in the continuum of care. Its simply amazing how far we've come. Progress, not Perfection. But, I'll take it!!! Good luck today, Reggie. I have no doubt that you will enlighten, engage and INSPIRE!!

  3. Right you are, Regina. We learned from the 2010 CHCF study into patients' use of PHRs that once they were exposed to the data, people got more involved in their care and asked more questions...yet another example of your ability to capture a complex aspect of our fragmented health system in a snapshot moment...

  4. "I will always stress the interpretation of health information technology as the most vital element to support patient engagement."

    You must be kidding right? During the AIDS crisis they changed health care pretty dramatically and it dint' have anything to do with technology.

    You are speaking at HIMSS on their 50th anniversary. Did you go to the events before HITECH? They were almost as big 3 years ago.

  5. Thanks Joleen, Linda and Jane for your supportive comments. You have been through the crucible and come out the other side fully aware of the implications of data access.

    Annonymous, you are correct that The AIDS crises was also a time of great change. We are again in a time of great change. The events that unfold now are fluid, but could soon become a cement. Yes, HIT existed before HITECH, but the application of Meaningful USE was a game changer. Very few systems were talking about data access while hospitalized, and now that is changing. I do not know your advocacy mission. But I know mine. When everything went wrong my husband's care and were thrown into the abyss of sorrow, I saw a light and it came from a computer screen.

  6. Hi Regina. I love running into people with such energy and passion for healthcare advocacy. Your life experiences and thoughts on healthcare topic and technology are very empowering and inspiring. Thank you for sharing.