What? My research never goes out of fashion! How can it go out of fashion when the problem is not solved, and my PhD is not even remotely appearing in the horizon?

Well, you may be right, but when I say fashion, I mean the hype your research topic can create. The amount of people wondering what is that thing that you’re talking about, and the most important of all, the grants! Yes, grants by venture capitals, research institutions, EU Framework Programme calls, you name it.  Why the grants are labelled as most important of all? Well, I’m terribly realistic sometimes, and there are some topics out there, which are so big and complex that you can’t produce concrete outcomes without spending millions of hours of work on it, and an effort of this magnitude can’t exist only by people’s personal commitments.

I’ve been following the EHR domain for about 7 years now, and I’ve been also following the popular research topics via many grants and calls for projects, especially in the context of EU FP 6&7. Something I’ve noticed is, EHR domain is being mentioned less and less in the research grants, and people writing project proposals are now trying to avoid focusing on EHR aspects as the core of their projects. Reason?, well, according to many, EHR is now a topic that has reached saturation in research domain. We know that the state of EHR is nowhere near where it was meant to be, there is a huge amount of work waiting to be done, and the domain will need a lot of support. However, the focus of research around health IT seems to be shifting to some topics like genomics based medicine, bioinformatics, gene therapy etc. etc.  Don’t believe me? Check out this call for example. Take a look at the contents.

So the focus in research is shifting, but previous research in EHR did not bring a lot of change into this domain. Or did it? If it did, why am I not aware of it? There are bits and pieces of outcomes here and there, which I can use. These outcomes are the results of research projects, funded by various organizations, but did we achieve the goals we declared we had in our minds when we applied for all those research grants? My answer to this question is No. It appears though, that EHR is something that everybody is tired of hearing. This is a problem, we do not have the systems we want, but already people are beginning to skip to next hot topics in research, and EHR community will have to link its efforts, and its existing intellectual investment to these new frontiers, otherwise we’ll be disconnected from resources of funding. Sorry for being so much focused on funding, but I see great danger ahead if EHR domain can not sustain its research, and unless we put EHR work into larger contexts, we’ll have serious problems.

I believe openEHR and 13606 can survive this transition, and they can be relevant and useful for new research topics, and this is mostly due to their two level modelling approach. With right reference models these initiatives can help other research communities by providing them a better, computable platform for their work. HL7 has its industry roots, and it will stay alive due to its nature and probably due to a lot of money which will be spend in USA, but I can’t see it surviving the next wave of data, with its current design. HL7 still seems to be looking for a way of achieving the features of openEHR and 13606, only with different names, so they have some way to go.

Therefore, I think we need to consider other forms of data in relevant, but different medical domains as requirements that must be handled with our existing research topics. The work around EHR should be considered for alignment to handling of genomic data etc. Otherwise, from a purely academic research point of view, EHR research may become obsolete before reaching its target level in especially clinical practice domain.

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.