Discombobulation. This was a great game with wonderful math skills and quirky discombobulation cards that encouraged you to start listing words within a specific category. If I played nice with children, I would come up with a category like Pokemon characters. But if I were playing to win, my category would be artistic terms for the color yellow. On my turn I would yell out "Hansa yellow medium!" The children and other adults would be stumped. I would win the hand! I also loved another card game called Thing-a ma-Bots. In this game you had to name robots and remember the names you gave each, as well as the names other players assigned. In a friendly game I would call all the robots names like "Crazy Hair Guy" or "Electro Man." If I wanted to win, I would name the robots "Semiotics" or "Cognitive Theory." I found children could not remember these words, as they had no exposure to them. Now the danger in this way of playing is people don't want to play with you. No one likes feeling stupid or ignorant. Often when you throw jargon into conversations with players or people you make them feel discombobulated. That is, they feel confused and frustrated. Kids are great at showing you their reaction to this feeling: they throw their cards at you. Adults don't say anything at all. They often smile and nod and feign understanding.
Now what does this have to do with patients' rights and access to data? One of the key reasons medical professionals give for refusal to complete medical data record access is (drumroll, please) we wouldn't understand it. If you have read a medical record in its entirety you know it is filled with a lot of legalese as well as detailed medical terminology. You probably had to look up quite a few words on the internet in order to understand the whole document. That is one of the beautiful things about access to a written record: you can look things up. You can ponder and research well into the night the meanings of the words before you. Juxtapose that situation with a patient being informed verbally of their test results. Unlike children, adults often smile and nod when being told results they don't understand. I applaud the brave folks who say "Wait a minute- I did not understand."
Yesterday I was so pleased to read an article in The Washington Post by Robert Barnes entitled "Justices learn a new word from a law professor." In the article it recounts a lawyer using the word "orthogonal" in describing and argument he was making. Justices Roberts and Scalia both questioned the meaning of the "new" word. The law professor explained its meaning and and called it "a bit of professorship creeping in." Why am I so happy about this small article? It shows that even the most respected and educated among us do not know the meaning of every word that comes by and it is important to ask questions.
Technical knowledge can be a great boon to society if we can use it in a way that informs instead of clouds discourse. When Fred was ill I visited a really nice counselor who specializes in bereavement and cancer care. She was giving me information on accessing data and fighting the system. While I was in her office to get pointers I noticed a basket of pastels on the table. They were very nice, artist grade pastels. She said she uses them for art therapy. I was taken aback. I asked "Isn't that a true cadmium?" She looked at me slightly confused. I pulled the offending red pastel out of the basket. It was a true cadmium, not a hue. In tiny print the label read: "Keep out of reach of children, known to cause cancer." The counselor was aghast. She had no idea the art supply was toxic. She had moved out of her knowledge comfort zone and into mine. She had entered the world of art jargon.
When we discuss the give and take of data access we must keep this in mind. The patient/caregiver and the medical professional both have their spheres of knowledge and each can learn from the other. Jargon can be a wonderful shorthand with fellow professionals and a dangerous form of communication outside of that group. When Fred was first diagnosed and I was deeply invested in study of RCC I would often talk to people about RCC and potential treatments. Once I spent five minutes talking to a friend about RCC before she stopped me with a question. She asked "What kind of cancer does your husband have?" "He has kidney cancer," I replied. From that day onward I would hardly use the term RCC, because I discovered non-medical people had no idea what it meant. I had fallen victim of jargon.
By the way, orthogonal is defined as right angle. Unrelated. Irreleveant.
Let's make sure in the coming months as HITECH policy is implemented, that patients access is not deemed orthogonal in the creation of a working electronic medical record.