Interoperability of EHRs and X-rays (or lack thereof)
Last week, after a successful Nebular Health Tech meeting with projekt202, I fell off a curb and broke my foot. The next morning it was quite clear that I literally couldn’t walk this off, I went to see my doctor (note: I have literally the best doctor and nurse anyone could ask for) who assessed it and took some x-rays. Avulsion fracture of the cuboid, lateral process. And sprained my ankle for good measure.
My doctor sent me home with a cast and some crutches and by the time I got home, I had an email from www.yourhealthfile.com – the patient portal for HealthFusion, Inc.’s EHR MediTouch (I actually got 5 emails in a row rather annoyingly). I of course opened it right away curious to know what the clinic summary was. And to see if the x-rays were included in the lab/test results section.
I am an ePatient. I am always curious to learn new things about my health. I stay in constant contact with my doctor, who patiently helps me in any way he can. But I HATE patient portals. I haven’t found one that is actually meaningful to me. The “secure” messaging is glorified email at this point. The setup for this one in particular took forever and I kept getting kicked off. I do like getting the clinical notes though I still can’t download the files to keep for my records. I have to print them out! When I asked HealthFusion via twitter how I might download the information in my patient portal if I ever change providers (which I won’t unless I move out of the state), they didn’t respond. So I find patient portals, and particularly this one that I’m stuck with, absolutely useless. In fact, my doctor asked me to use the patient portal instead of email and I bluntly said no because I can’t access it on my phone and the messages I send through it take longer.
Sadly, my x-rays were not connected to my EHR. Some systems do this, but many don’t. These are my records as much as the clinical notes and because of a lack of interoperability, I don’t have access to them.
Interoperability of Generations
Interoperability refers to the ability of diverse systems and organizations to work together. In health IT, this means information can be exchanged AND used between systems – as hoped for with Health Information Exchanges (HIEs). I guess the example that comes to mind I recall from a kid – before interoperability if I wrote something on a Macintosh computer I couldn’t bring my floppy disc home and open it on my PC, I couldn’t retrieve the file. Now the systems integrate. I can open my Word document on most systems. But EHRs still face huge challenges in working together. And this x-ray is the perfect example. The x-ray is on 2 systems that don’t inter-operate. It feels like the early ‘90s.
When I realized my x-rays wouldn’t be accessible, I immediately wanted to call my grandma. My grandma was an x-ray technician at Bess Kaiser Medical Center for 26 years. She was appointed by two governors – Govs. Bob Straub and Vic Atiyeh – to serve on the Oregon board of licensure for x-ray technicians. Actually, she helped establish the board.
I didn’t know all of this about my grandma until about 5 years ago when I started working in the Texas State Legislature where I reviewed several licensure bills that came to the Public Health Committee. Because I didn’t make much on my meager stipend, I also babysat – taking the time the little girl I watched slept to do all my bill analyses. On the walks to her house through a neighborhood that was not the best, I would call my grandma to keep me company. I would tell her about the bills I was working on or the testimony in the Committee that week. And little by little she told me her story.
My grandma was a rabble rouser. She was tough as nails. In high school she was captain of the Sea Scouts and sailed on the Columbia during WWII because there weren’t enough men to man the boats. She raised three kids while my grandfather was off to war while working as a radiology tech. And in 1973, she set up and operated the first xeromammography unit in the state of Oregon.
Late in her career, she started picketing with her fellow technicians when they were being treated unfairly – given the worst hours and paid less than their male counterparts. She joined with the United Food and Commerical Workers Union Local 1092 serving as excutive board from 1979-1982 (the year I was born). And before that she had already pressed worked to establish the board mentioned above. She told me that the men on the board, especially the doctors, would threaten her and her career if she disciplined fellow techs. They thought that since she was a woman, she could be intimidated, but they had no idea what she was capable of.
In the last 5 years we talked endlessly about health policy – everything from the Affordable Care Act to human rights. So of course I wanted to tell her how insane I thought it was that I couldn’t get access to my x-rays. She was a patient advocate – she believed in healthcare for all and access of patients to their health records. She fought for safety – her main concern with a profession that went unlicensed in the state for so long. I’m fairly certain she would have agreed with me that I should have my x-rays (though she would also tell me about the time she broke BOTH her ankles – implying my broken foot was nothing to complain about).
My grandmother, Patricia Troyer, died the day before Thanksgiving last year from acute myeloid leukemia (diagnosed on October 23, 2012, which happened to be 20 years exactly since my grandfather died from melanoma). When she died, all I could think of were the years of missed opportunities to talk health policy and to learn about her past endeavors in the healthcare field.
But for so long we hadn’t been able to inter-operate. I didn’t understand her fierceness. She was harsh and unforgiving most times. She had her opinions and would let you know them. She made fun of my lisp when I was a kid and always told me I didn’t skate fast enough when she watched me practice. And when I left home as a teenager to escape abuse, she couldn’t quite understand what was happening. For years we didn’t talk.
Somehow through our talks about my work in health law since graduating law school we connected. We found a way to integrate our systems. We all the sudden were talking the same language and could understand one another. What inspiration she gave me! From there on out, we talked every week about everything from health policy to her roses – for she worked as a master gardener for 30 years after she “retired” from being an x-ray technician, even creating a rose with my grandfather.
I saw my grandmother for the last time for my birthday on September 27, 2011. It was the first time I’d seen her in 10 years. She was so proud of all I was doing. The weekend before she was diagnosed with acute myeloid leukemia, I was running Health 2.0 Austin’s code-a-thon, Codeo. I didn’t get to talk to her the week before as usual because of all the chaos and I didn’t get to follow up with her that Monday. I talked to her a few times via Skype and the phone. I reminded her that she introduced me to Shirley Temple, reminisced about our wonderful trips to Tillamook Cheese Factory, Oceanside, Oregon and Multnomah Falls, told her about The Walking Gallery, and finally went back to where we finally found interoperability – on those walks. I told her that I wish we could “talk more health policy while I walk to babysit beautiful children that I will tell about an incredible woman who changed the world in health care and by just being my grandma.”
These days there are so many times I want to pick up the phone to call her. Tuesdays are the hardest – that’s when I’d call her and tell her about the cancer patients I used to see as a volunteer at a clinic in town. I want to call her today and tell her about my foot and hear about how at least I didn’t lose three fingers like my uncle did (the joke in the family is that no injury could ever compare to that injury). She would tell me to get up and get going in her usual tough love way.
If I could call her just now, I’d want to talk with her about interoperability – of x-rays with EHRs and of our generations. How we are still too disconnected and of the opportunities that await us when we finally come together – whether through technology or human interaction.
I did get to see my x-rays when I returned to my doctor’s office today along with a brief anatomy lesson. (Have I mentioned I LOVE learning?!) But these x-rays are still not in my EHR. If my grandma had been my x-ray technologist, she would have gotten the films to me. Instead, she has given me the inspiration to fight for a better way to inter-operate, to be fierce and demand change in the healthcare system.
I love you, Grandma Pat.