On Saturday June 11th, I planned to finish up Health Innovation Week DC by attending the Health 2.0 Code-a-thon. I had never attended a code-a-thon before and thought I would attend as an artist. I also thought I would kill two birds with one stone by painting Keith Boone’s Jacket (@MotorCycle_Guy as he is known on twitter.) You see Keith is a HIT standards geek. He codes. He stays up writing standards. He doesn’t sleep so you and I may have a better chance to live.
I had been following him on twitter for quite some time, but I came to his attention due to a twitter stream that talked about The Walking Gallery. Keith is rather famous for wearing a vest to coding and health events and he was willing to trade in his vest for a jacket. Keith mailed me his jacket and I put it in the ever growing to do pile.
Although, I worked almost non-stop in the week leading to the Gallery, I did not finish some of the jackets.
I felt so bad.
Some people were coming in from far away to be walkers. I had let them down. I wondered how I could make them laugh rather than frown when they picked up a blank jacket. Then an idea came to me. I could print out custom fail whales to attach to the jackets. Most of the Walkers were on twitter so they would surely get the joke. You see twitter often gets over capacity and then you are greeted with a fail whale and you cannot be part of the twitter feed.
So I wrote: “Regina is over capacity. Too many jackets! Come back later.”
When Keith saw this he laughed, and walked the Gallery wearing his fail whale. Later in the evening, Keith told me he would love to have his jacket by Monday the 13th, as he would be back in DC to give a speech. I told him I would get it done. The only problem was that I was booked solid for the next few days during Health Innovation Week DC. As I began to run out of time, I had an epiphany before the Health 2.0 code-a-thon. I would paint Keith’s jacket at the event. After all, Keith is deeply immersed in the world of HL7 code. It would be the perfect environment.
I lugged my easel and supplies to the KP and asked about setting up. The Health 2.0 crowd waved me to the main room, but the building director came around a corner and told me the sad news: I would not be allowed to paint. The floors of the center are recycled soft wood and they are very easily damaged.
But I was determined to be present as an artist, so I came up with an alternative plan. I would set up my easel in front of the building. My friend Ted Eytan was worried I would get too hot or feel too out of the loop, stuck outside the main event. I would be just another patient left out of a meeting about health.
But it was an amazing morning. As I painted Keith’s jacket I saw so many things. I saw the center’s security guards gently direct ill patients to the member entrance a few yards away. I saw pedestrians walk past me and engage them in talks about their health. One delightful lady was a friend with a New York Times reporter and she took my card. Another lady was so intrigued by the concept of the code-a-thon she even joined the event for about an hour. I spoke to many wonderful “regular people” while I painted Keith’s jacket.
This is Keith Boone’s jacket: “I think of Coding.” It is about the lives that can be saved when programmers and regular people come together. This jacket depicts five vignettes provided by the member of Keith’s HL7 coding team. In the center a new mother sits nursing her child. A nurse is trying to administer a shot of radionuclide scan. The mother is placing her medical record before her informing the nurse she will not take the scan, as she does not intend to give up nursing her child. Here is the situation as it played out in the words of the patient:
“In 2001, I was having some jaw pain. Finally sick of my hearing about it, my primary care physician sent to an Ear, Nose and Throat specialist.
He was able to diagnose my jaw pain as being tooth related - but he noticed an anomaly on my thyroid.
First was the ultrasound ... and then the wait.
Then was the needle biopsy ... and then the wait.
Then was the radionuclide scan...
I had, through all of this, been very careful to ensure that all medical personnel knew that I was a nursing mother. It was charted. The radionuclide scan was just about to put the needle in my arm when I pulled away to double check...
"When can I nurse my daughter", I asked.
"I know I have to pump and then dump the milk first ... but what is the half-life?"
"No, look, you can't nurse again. You shouldn't get pregnant for the next six months either"
"Uh, then I am not getting this test. Find another method.
The technician gave me a disapproving look
"Without this dye, you can't get a really good picture. There is a dye that we can use, but...”
"Then use it. And be damn glad that I didn't have to suddenly wean my daughter because you can't read a chart".
Well, the results came back warm, so I was booked into surgery. Over and above the usual angst, I had a will to write, because my previous one left everything to my ex-husband, I had two kids to think of, one a nursing wee one, and I had no idea how I was going to cope.
The Toronto East General patient advocate was heaven-sent.
While I arranged for my eldest to be looked after, the East General Patient Relation staff went above and beyond the call of duty. She ensured that the nurses were forewarned, and that a cot for my daughter was placed in my room. She worked with the anesthesiologist - as long as I expressed and threw out the first milk (post-anesthetic), I could nurse my little one, and have her overnight with me. It all went brilliantly.”
To the left of this scene, a Spanish-speaking woman tries to communicate via phone after brain surgery. This friend of Keith’s is an expert in privacy and security, as well as in public health. Yet, she was told that a family member couldn't translate for their Spanish-speaking mother, recovering from emergency brain surgery. They needed to use a hospital-supplied translator -- over the telephone.
Above that figure stands a code-a-thon presenter. He is presenting a slide set that repeats again and again, “We code till 3:00 am to save lives. We code till 3:00 am to save lives.” And this addresses the heart of Keith’s concerns.
As he states: “I've been at this for 7 years and we still aren't where we need to be for myself, my family and my community. My community includes a group of people like me. All save one write blogs, most about Healthcare IT, and most are also on twitter. This community leads or has led work on standards in ASTM, DICOM, HITSP, HL7, IHE, ISO, and the S&I Framework. They work for themselves or healthcare IT vendors or healthcare provider organizations, developing solutions to problems they or their family have faced personally. But nobody pays us to stay up until 3:00 am to finish the work. We are patients, volunteers and advocates for better health IT. What we do in standardizing Healthcare IT must be something can be used with our parents and our children, and our communities.”
To far lower right a patient lies upon the ground trying to stop a syringe of penicillin. Here is one of Keith’s friends in the standard’s community explaining that image: “Anyway, stupid medical mistakes that could have been avoided with proper IT and interoperability and standards: My brother went in for surgery a minor surgery and the site got mildly infected. They tried to give him penicillin, which he has a severe anaphylactic reaction to. Documented and known since he was 6 months old. Only reason they didn’t (give penicillin) was his wife, who is an ER nurse and thus was listened too, when they wouldn’t listen to my parents…
To the upper right part of the painting two older people knock despairingly upon a glass door it is labeled: “Medical Records Closes at 5:00 on Friday.”
This is Keith’s story:
“My dream is that nobody will need to spend three days in the hospital receiving inadequate care because medical records closes at 5:00 on Friday. My stepfather did due to the fact that my mother didn't carry his X-rays in her 3-inch thick folder of his medical data. My mother-in-law did too, fevered and raving, antibiotics not working, and doctors confounded until they discovered when records arrived on Monday morning that she'd just completed chemo the previous week.”
To a little right of center a boy stands holding barium in one hand and an ID bracelet on the other hand. Here in the words of Keith’s friend is the reason why:
“An Adult son was to receive an upper-GI imaging procedure using barium, but it was given by mistake to a pre-teen with the same first name, because using only the first name protected privacy. “
Ironically, this friend was is a privacy expert who knows how to address the privacy requirement safely.
Above all of theses sad scenes, code pours out of five keyboards as five coders desperately write code. The vignettes themselves seem to be immersed in flames.
Out of those flames a Phoenix rises. Upon her wings are those letters that can change it all. Do you think a dysfunctional medical system can stand a chance against programmers who define themselves first as patients and caregivers?
I think not.