October 11, 2010
The story of the patient
At the Cerner headquarters in Kansas City, next to a room filled with the newest health information technology devices, hangs an Egyptian scroll.
It is a very old medical record. As a Cerner associate joked in reference to the many small holes in the document, it must be “HIPAA compliant” with so many missing personal identifiers.
Why is there a scroll on the wall?
Why do I speak about patient access to the EMR? Why does a patient rights advocate constantly attend HIT meet-ups and Health 2.0 events? During my husband’s twelve-week battle with cancer and subsequent death, I was outraged. I saw so many horrible things happen. I could talk endlessly about patient safety issues or the attitudes about death and hospice in the American medical system. I could rail on the mistreatment of the uninsured or underinsured. Instead, I tend to focus most of my advocacy on the benefits of health information technology and most especially, the benefit of patient access to the electronic medical record.
Health IT is not sexy and it doesn’t grab headlines. But it is a revolution in the making and that revolution is in part fueled by the HITECH legislation and its defining term “Meaningful Use.” People often look at me blankly when I begin to expound on the power one’s health information. The fight for information access comes before all other fights. Without access to information, we cannot ascertain the cause of infection nor can we determine the best path of treatment. Health Information Technology is the printing press of our time and Patients are the readers and quickly becoming content creators.
What do patients have to do with HIT?
When I was a young girl, I watched a lot of television programs on PBS. I watched quite a bit of Doctor Who and Monty Python and a really great documentary series. The series was called The Day the Universe Changed. It was a British program narrated by James Burke and built upon his prior success with a series called Connections. The Connections series was the Pulp Fiction of the documentary: it was daring and new and abandoned a basic linear presentation of history and science. I would often breathlessly wait to hear what amazing new connections Mr. Burke would impart to the avid viewer. He introduced episode 1 of The Day the Universe Changed with these words: “You see what your knowledge tells you you’re seeing. Well, that’s what this series is going to be about. How what you think the universe is, and how you react to that in everything you do depends on what you know. And when that knowledge changes, for you the universe changes. And that is as true for the whole of society as it is for the individual.”
That is a really important concept. What the individual knows changes their personal universe. This change on an individual level can directly affect one’s own health outcome and the combination of these many individual experiences can create societal change.
That is another reason I really liked The Day the Universe Changed. Often those personal individual changes and small events create a ripple effect that can be felt across the nation. How does a muralist widow in Washington DC have any affect on EMR adoption and transparency in records?
It is amazing the effect patients can have. They can be an e-patient and affect their own outcomes by being enabled, empowered, equipped and engaged. They can also take that personal advocacy and direct it toward public policy. They can share their story with us all. For indeed, that is what the EMR should be: the Story of the Patient. Yes, the electronic medical record contains billing codes and legal language, but its original intent is to tell the story of the patient.
That is the meaning of Meaningful Use.
Regina Holliday is a DC-based patient rights arts advocate. She is currently at work on a series of paintings depicting the need for clarity and transparency in medical records. She placed her first mural in the series in May of 2009. After the death of her husband, Fred Holliday II, on June 17th 2009, She began a large Mural Titled “73 cents.” This piece can be viewed at 5001 Connecticut Ave. Washington, DC 20008. This piece depicts Holliday family’s nightmare journey through the medical system during Fred’s cancer care. The painting became part of the national healthcare debate and was covered by the BBC, CNN, CBS, AOL, VOA, NPR, The Washington Post and the BMJ. Regina Holliday can be found on Twitter and on Facebook. She speaks at medical conferences providing the patient voice in discussions about HIT. Visit her blog and her timeline of advocacy.