The Forest, My Trees and a Major "DUH!" Moment

Monday August 2, 2010

What do medical records, a 12 foot wide painting in Washington, DC and clichés have in common? Bear with me on this one...

Medical Records
I've written before about my friend Regina Holliday, whose husband Fred died of cancer in June 2009, after several horrendous experiences trying to get the care he needed. Among those terrible experiences was the fact that at one point, Fred was transferred to a different hospital - but Fred's records didn't make the transition with him. When no one would treat him for his pain, and when he could not get the medical attention he needed, Regina returned to the hospital he had left and begged for copies of his records so she could hand-deliver them to the new hospital. She was stonewalled, and finally told she could return to get those records in 21 days, for 73 cents per copy.

(Don't you wonder how those records people sleep at night?)

The Painting
Regina is a painter, and she paints what she is fighting for. Last week, several of her paintings and other art were unveiled at a showing in Washington. Among them is a painting called "Give us Our Dammed Data!" Please note the spelling of the word "dammed" -- which, as it turns out, Regina intentionally spelled that way. The painting depicts 19 of us authors who have written books about our horrible experiences with the medical system. The word "dammed" means that those records were held back, not available to her so she could help her husband.

I've written a long post about Regina's painting and my emotions at my personal blog. I'm actually keeping it together for this one, but then, I've had several days to get past those emotions... and you can see a photo of the painting here, too.

The Cliché
Until I saw Regina's painting, and realized my role in the painting, I had completely missed the forest because it was obscured by my own tree.

The painting is a cry for "meaningful use" - that is (among other points which I wrote about recently) the ability of patients to access and use their own medical records to help make good decisions about their own care. For many of the people in the painting, medical records played a role in what they were trying to accomplish. That's the forest.

Of course, for Regina and her husband, Fred, the point was that they were not allowed access to Fred's records in a timely manner. That was their tree -- their inability to get those records. Fred suffered for days - not all 21 Regina was told she would need to wait - but even a few hours of suffering for Fred was too much.

My tree (my major "DUH!" moment) was the opposite tree! In fact, my tree was the one that DID allow me access to my records. During my odyssey with the healthcare system, I had no trouble getting the records I needed, often within minutes of asking for them, delivered right to my desk through my fax machine. No one stood in my way. No one charged me one penny.

Regina and Fred's NON-access led to Fred's suffering and death.

My total and fast access led me to figure out I had no cancer. And somehow, for all these years of discussions of meaningful use, I had never made that connection - the connection that says we are on opposite sides of the same coin. (yes, another cliché - but it works.) That was my DUH! moment.

The conclusion? As patients, our access to our medical records can make the difference between pain, suffering and death -- and life. The law is on our sides, and can be invoked if you run into problems. But don't let anyone tell you those records, and the potential life saving or suffering relief you can make happen with them aren't worth your efforts.

I can see my forest much clearer than I could before. I hope you can, too.

• Read Regina's description of her painting

• Learn more about how to get copies of your medical records, and what to do with them once you get them

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