Like many of you, I was drawn to a health-related career because I wanted to use my skills in a way that could help others. I was a Sociology undergrad in Alaska in the early 1990's. Most of the health IT and analytics jobs that are in such demand today did not exist. But there was no shortage of complexity and confusion in the healthcare landscape, as I discovered in November 1996, when I was 22 years old.
Long before I was a health analyst, I was a patient. And I've been one ever since. Just as I was learning how to live in my own apartment instead of the dorms, I was admitted to a Fairbanks hospital for six days that I barely remember. I'd been sick for awhile, but now they knew for certain that it was Lupus. And even though no one gets an instruction manual along with a diagnosis, I sure could've used one right about then.
Today, a new Lupus patient in her early twenties wouldn't receive the grim outlook I was given for my life expectancy. She would be able to visit the Lupus Research Alliance website or find out the latest interventions from the Mayo Clinic. She may know other women (her friends, her family) who were able to write at least a chapter of the personal instruction manual that's needed to manage a chronic autoimmune illness. She would experience care coordination that was not available to me.
One of the reasons I moved away from Alaska in 2011 was because there were only three Rheumatologists in the entire state - and none of them specialized in Lupus. For years I had received specialty care (and participated in clinical trials) in Seattle instead. I still remember packing my hardcopy medical records and x-ray films (films!) in my carry-on for the three-hour flight. Even after these records were handed over at the clinic, my insurance details and patient history forms were filled out again by hand, over and over, every time. I had to be a party to the silo-ing of my data even though everyone could see how it led to inefficient care all around.
For example - how did my internist in Anchorage get my lab and imaging results back from my specialists in Seattle? By fax - if it wasn't busy. If it was, maybe not at all. My initial experiences as a Lupus patient were in the last century, before EHR incentives and smartphones and precision medicine. But my medication therapy is still stuck in the 1960s and the affordability of my health insurance is actually less predictable now than it was then.
I will do my best to take care of myself over the next 22 years, but my case will get more complex because that's one thing about Lupus that hasn't changed. And this: last week I asked Clinic B (in the town where I now live) if they could accept an upload of my digital records from Clinic A (in the town where I used to live).
Sorry, ma'am. You'll have to go ahead and print those out.