As I mentioned in my last blog post I got a pretty bad eye inflammation about two weeks ago which, among other things, prevented me from writing blog posts (or anything else for that matter) during last week. I will here write about two healthcare encounters during last week from a patient’s perspective, since I could make use of my patient accessible electronic health record, “Journalen”, in quite an interesting way as a kind of communication tool during the visits! I will write about this from a research perspective later on.
Everything started when I was at my country side at Gräsö in Uppsala County Council two weeks ago. I felt more and more pain in one of my eyes. After lunch I had no other choice but to visit an emergency ward close to Gräsö (also in Uppsala County Council). Quite soon I got the chance to discuss my current condition with a physician and of course my health history and current medications were important topics. As I have written in e.g. this earlier blog post I have a history of regular hospital visits due to a couple of auto-immune diseases and the immunosuppressive medication I need to take. There is quite a story to tell, and it’s hard for me as a patient, as well as for the physician who had never met me before, to know which parts of my medical history are the most important in this particular case. And it doesn’t really help that I’m a “Stockholm patient” – there is really no easy and fast way in which a physician in another county council (like Uppsala, in this case) can access most of my medical history. In the middle of the discussion I came to think about my patient accessible electronic health record – the physician cannot access any part of my health record, but I can do it from my phone! So, I asked if it would help if I showed an example note from my physician in Stockholm, summarizing who I am as a patient. After we had reached a consensus that it was a good idea, I logged in and opened an old note summarizing my health conditions and current medications. The physician read through the text and then we discussed a few of the points mentioned in the old visit note. I’m not sure if the outcome of the visit was affected by the discussion around the old visit note, but one conclusion drawn was that the condition in my eye could be linked to my other health conditions. But the story doesn’t end here – they didn’t have access to the right equipment at the emergency ward, so the antibiotic salve (prescribed in most eye infection cases) I got might not help. Thus, we concluded that I must seek hospital care in Stockholm if I noticed that the salve had no effect. Before I left I brought up the topic of health record access again and asked the physician to document my visit in the record as soon as possible, so that I could show his notes in Stockholm if needed (physicians in Stockholm cannot reach health data recorded in Uppsala). He agreed to do that.
It didn’t take many days until I realized that the salve indeed had no effect and I needed to go to an emergency ward in Stockholm where they had the right equipment. When I met the physician I was of course asked when and how everything started and after giving a brief summary I showed the recently registered (but yet unsigned) notes made by the physician in Uppsala! Once again, we had a short discussion based on the content of the note I showed. The conclusion made in the end was that the eye inflammation was indeed connected to my other auto-immune conditions and the new treatment with cortisone drops seems to work.
I’m not sure how much my use of the patient accessible electronic health record Journalen helped during the above mentioned visits, but two things seem very clear:
- I could use my access to Journalen to transfer important information about my own health, not easily accessible by the physicians, between county councils.
- Journalen could definitely be used as a tool to support communication between me and the physicians in a way that was beneficial for us both.
Later on, I will try to put this in a research context. Right now, I just want to give these examples of how a patient accessible electronic health record can be used as a communication tool during doctor’s visits!