Those of you who know me in person have seen "The Vest" with the rising Phoenix on the back. It was selected by my 4-year old daughter 5 years ago at a fair. It's got one working pocket now, and is worn to pieces. Something better is coming, and I'm quite excited.
Soon I will be participating in The Walking Gallery by Regina Holiday. It is first event in health innovation week DC: http://www.tedeytan.com/2011/05/06/8193
To see some of what will be on display, check out:
How this came about is another bit of #HITsm magic. Today was the first #ONCchat tweetchat. @TheGr8Chalupa, @fasal_q and I traded some banter on the chat that had to do with my writing and Regina's art. Regina asked later if I'd walk and it took me about 10 minutes to decide to do it.
So, I've been asked to promise that I'll wear this art to other conferences and events. I MOST certainly will. Every HL7, IHE and SIframework meeting I'm at. The Interoperability Showcase. The Public Health Informatics Conference. AMIA if I get there this year.
I've also been asked for a story. I have the first part, which is mine, but there is more that I want to do. I've asked a few friends for their stories also. I'll boil them down to the essentials because this is about a community of volunteers who are patients and patient advocates. This is a story I've long wanted to present, and a blog post that I've written several times but was never quite ready to publish because writing it brings me to tears sometimes.
It starts here:
I've spent many a night up till 3:00 am writing Healthcare IT standards and implementation guides. Some of these are now used in the hospital 17 miles from my home. Soon my Doctor who has been using an EHR will be able to given me an electronic copy of my health record in an standard (HITSP C32) that I and many others edited for HITSP, based on a guide (XPHR) that I worked on with many others in IHE, building from the CCD guide that I and thirteen others edited in HL7, building upon the HL7 CDA standard which I also helped develop. That work now currently being updated in the S&I Framework projects from ONC.
My dream is that nobody will need to spend three days in the hospital recieving inadequate care because medical records closes at 5:00 on Friday. My step-father 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.
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 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.
G's adult son was to recieve 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. G is a privacy expert who knows how to address this and other privacy requirements safely.
L is an expert also in privacy and security, as well as in public health. She was told 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.
The story doesn't end here yet, but I haven't gotten the other stories that I asked for. I already know what they are, but I need permission to print them. The anonymization I've done won't stand up to any deep scrutiny. So there will be a follow-up post to this one.
But this story will also never end, because there will always be one more thing to do, and other volunteers like these who will work til 3:00 am to do it.
Fortunately for me, it's not quite 2:30 am, so I'll get an extra half-hour of sleep tonight.