Musings: Where Is Our Health Information Technology When We Really Need It?
Here's me and my aunt Sheila on Jan. 19, right after we picked up our inauguration tickets on the Hill in DC.
At the start of my career I worked as a reporter for a great publishing company in DC. My beat was healthcare, and health information technology was all the rage. I covered brown bag lunches at associations, hearing after hearing on Capitol Hill, and came back with page upon page of notes and quotes from experts touting the future of the American health care system. That future meant the ability to share medical records electronically. Even in the 1990s, the technology was there. No more faxing paper copies of vaccination records and test results from clinics to hospitals, or carrying around flimsy delicate X-ray films from office to office. That would all be done for us, or so we were promised all those years ago.
Real life has a way of breaking the most well intentioned promises, and I realized this first hand this week when my aunt informed our family that is suffering from advanced uterine cancer. It has already spread. She is facing this news with more positivity and grace than I could ever imagine, so most of the family finds ourselves working to keep each other motivated, and just doing whatever we can to help.
Over the weekend my family agreed that the best plan was to get her to UCLA’s Jonsson Cancer Center as fast as possible. My job for now is just to be here and do whatever she needs, so we got up early Monday and hit the streets to ensure everything that needed to go to UCLA could get there as soon as possible.
The ridiculousness of our current medical information systems became apparent almost instantly. Here is my aunt, suffering from a Stage 4 cancer, and yet I’m driving her around to sign forms and pick up the pieces of paper that might help save her life. Rather than her resting, saving her strength for the coming chemo, or just doing anything else, we were going from place to place picking up photo copies.
Because my aunt has apparently been sick for a while, there was a chance that something in her charts at several offices could have been relevant. We have primary care doctors, OB/GYNs, the occasional specialist. And I had to drive her around to all of these places to gather her info. At no point would anyone release any information to me or any other family without her being present. Annoying but understandable. But where was the consideration for the sick patient herself? At that point she was not sure where should be going for the next phase of her care, so we didn’t know where to send things—we had no doctor to do this on our behalf. So there we were.
Even asking to make arrangements for future release of information, with her present and me offering full ID, caused a kerfuffle. There are no forms for her to sign so that when she needs a document, someone else can get it on her behalf. We had to write it in at the bottom of a sign-in sheet one place, at another place the receptionist said there was no way. Even if she was admitted at UCLA, she would still need to come IN PERSON to get her own information. Of course the hospital could request whatever they want, but for a family trying to actively engage in following a loved one’s care, having a copy of the record for themselves can provide a lot of information and maybe a bit of relief. And in most places, that is not available.
So for all the HIPAA advocates I worked with back in the day (that’s the Health Information Portability and Accountability Act, signed in 1996), I ask, where is the portability in all this? Maybe there is some major benefit on the backend, but the only thing I’ve seen HIPAA mean is that I had to sign something stating that my doctor or pharmacist gave me a pamphlet with everything I needed to know. If there is a real benefit for the patient, this would have been its time to shine. And I just didn’t see it.
After all that, our efforts weren’t in vain. Based on something red-flaggy in one set of records we picked up, my aunt’s primary care doctor was able to immediately call her contacts at UCLA and get her in. She’s there now, and she can use your prayers.
