Patient access to EHR

I’ve just written this bit in CHIME blog. I’ll copy it here too.

We spend a fair amount of time talking about the things we can do if we had proper EHR. I just found out that sometimes you discover use cases not only by imagining what would be better, but also experiencing what has gone bad. It is bitter, but it is still useful.

I have arrived Turkey less than a week ago, and I am here for family related things. When I was here two months ago, my mother was trying to get better after her meniscus surgery for her left knee. That was a surgery he failed to  mention to me, just like my father failed to mention his eye surgery. My parents, being classical parents, still try to keep me away from anything that may worry me. Since I’m in London, they assume that I’ll worry too much for their problems, since I can’t help them from abroad. Well, it is true that I’ll worry, but it is not true that I can’t help. I could have helped if I had access to their medical data as their son, since one can do a lot today, armed with Internet access. Even knowing their exact problems recorded by their doctors would help, instead of trying to pull out the words from my parents’ mouth who barely say more than “it is no big deal actually”.

I could have avoided the situation I’ve faced a couple of days ago also. Here is what happens when you don’t have access to your medical data as a patient.

When I arrived here last week I did not find my mother in a better position. Her knee was not that better than the last time, in fact she was almost the same she was just after the surgery, and that was actually worse than she was before the surgery.  In two months she was supposed to get better, she was not supposed to have knee pain, and yet she was in front of me with her right knee making her limp. I asked her why she has not gotten better, and what I heard made me frustrated and angry. Later when I calmed down and asked the details, I came to realize that what happened to my mother is a perfect example of information being handled improperly, which in my opinion has led to malpractice. (Please drop me a line if you don’t agree, after reading the rest of it). So what happened to my mother?

She visited a surgeon a couple times for her problem. He was highly recommended, and he approached my mother’s case with care. He told my mother that most doctors would recommend that she had an implant placed in her knee. Her knee had multiple problems, meniscus being one of them. There were cysts in her knee, and some cartilage and fractured pieces that needed cleaning. He told my mother that he would perform a surgery that would give her maybe another four or five years before an implant, and my mother preferred this option, which was percieved as an offer from an experienced surgeon, who was regarded by many others as a man who could do what he said. My mother paid him for her multiple appointments before the surgery, and for two others after the surgery. The only minor problem that was discovered later was that, he never performed the surgery!

He says that he is suffering from thalassemia, also known as mediterranean anemia, and he got high fever at the night just before the surgery. So he made a phone call to a colleguage of his from the same hospital, telling him to do the surgery. Instead of telling this to his patient, he notified a relative of my mother, who is also working in the same hospital as a doctor, two days after the surgery. Being shocked, my mother’s relative was trying to come up with the right words to explain the situation to my mother, who were paying for new appointments to her doctor after the surgery. Finally when the situation was explained to her, she checked the papers given to her after her discharge, and things got even better at that point. The colleguage who was called at the last minute also lied to his friend, my mother’s doctor, and he did not perform the surgery even. Two names were on the paper, saying those two doctors performed the surgery. My mother had an ultrasound, since she did not have the slightest trust for no one in this anymore, and it was understood that some of the things written down as performed, were not performed.

The least I can call this situation is mess.  Having this situation at hand, I could not help thinking about what would happen if I had access to my mother’s medical data. I could have seen her doctor for the surgery being changed from a to b, for from b to c1, c2. These doctors who simply referred my mother to other doctors in just a couple of hours would at least have access to her data from her previous appointments. (Still this does not mean they would care, looking at what they have done). I could stop this from happening. I could check out a web based system all the time to follow her treatment. That would make me feel much better as opposed to what my mother believes. Assuming people in the hospital kept records right, I could simply ring my brother and ask why the name for the scheduled surgery was changed.  This did not require a huge technological infrastructure, just a capable EHR sytem in a hospital linked to a patient portal would be enough. No connectivity, no semantic interoperability, just an EHR system which would have made this type of applications easy to develop.

All these woulds or coulds do not mean anything now of course. My mother is waiting for my wedding to be over, to have a second operation for an implant, and who knows what kind of other similar situations are out there just as I write this.  I am really sorry for having a real life example about the importance of patient access to EHR, based on my own family, but there is a lesson we need to learn here. Patients should have access to simple, but critical information about themselves all the time. If something about their care fails, they should be given the option to catch it. I really would not like other people to see the importance of this in the way I did,  but until we fix these problems, these situations won’t go away easily.