A few weeks ago, I had a series of pulmonary function tests—a routine, annual procedure, just tracking my lungs’ status. I’ve been doing these tests at a local hospital for decades, now, so I continue to do the procedure there to keep a comprehensive record.
Only one problem: the hospital’s electronic medical records do not speak to my providers’ electronic medical records, either here at home or at Boston Medical. So, I have to track down my test results each time, get a printout, and bring them to my Boston Medical pulmonologist for our next appointment.
Now, you might wonder, why not have the tests done at Boston Medical? Their EMR speaks to my local providers’ EMR, and vice versa. And the answer is: I don’t want to have to make yet another trip to Boston for yet another test.
HIPAA regulations do not make this process any easier. As of this PFT appointment, the respiratory tech could not give me any printouts. I signed a bunch of forms to be sure the results got to my local rheumatologist, who had ordered the series for me. I also signed forms to send them to my Boston Medical rheumatologist. But, having learned to be a skeptic about the efficiency of medical systems sharing information with one another, I decided to get a hard copy to bring with me, just in case.
Where to start? Seems like the obvious place would be the hospital’s medical records department. I looked up the number online and placed a call, only to get a message that the number was no longer in service. No info about whom to call or how to get any help. Not encouraging. I contemplated going to the hospital in person, but reconsidered. I was not in the mood to beat my head against the wall.
I knew the results were available, because I had received a message in MyChart to that effect. But when I went to look in my electronic medical record, all I found was a blank page. Aargh.
So I called my local rheumatologist’s office and asked if they could get me a hard copy. Fortunately, I spoke with a very helpful nurse who could see the actual results online (only viewable by the provider, not the patient, for some dumb reason). She put in a request to my rheumatologist to get me a printout.
Lo and behold, a day later, I got a message that the results were waiting for me. All I had to do was drive over to their office and pick them up. I could have had the printout mailed, but I wasn’t sure I’d receive them before my Thursday appointment. And so, on a sunny Monday afternoon, I took time out of a busy day to get my test results, which were, as promised, waiting for me in an envelope with my name on it.
Dealing with a chronic illness requires a lot of managing—not only your own health, but also coordinating all your specialists and keeping track of a ton of information. I’ve been at this for many years, and I take it mostly in stride. But I always wonder: Why does it have to be this complicated? And why can’t I see any test result that is my own when I want to? And why must EMRs from different systems be unable to share my information, even if I authorize it? In 2024?
Sometimes, it feels like yelling into a rain barrel.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.
Image: Lobby Card from the 1925 film “The Pony Express” via Wiki Commons