A few months ago, I wrote about a workshop that focused on critical incidents and eHealth, in which I participated as a patient. My contribution, which you can find here, was based on a real-life scenario, which you can find at the end of this post. The critical incident, highlighted by the scenario, relates to a situation in which lack of access to my electronic health records could have had severe consequences.
The scenario was written at a time when the county council I belong to, Stockholm, had not yet introduced Journalen (which is the system currently used in Sweden for accessing medical health records online). Quite soon after the workshop, some hospitals in Stockholm (one of which I go to) started using the system.
Last Friday I went to the lab for the regular blood tests I need to take due to the immune suppressive medication I use (see scenario below). Two hours later I logged into Journalen and all test results were already there for me to see! Apart from specific results, reference intervals were also given as a way to indicate what could be considered normal values. There was also a graph function that showed how specific values changed over time. The image above shows one example (a liver value – the medication can in rare cases cause liver illness).
This is exactly what I have been looking for – if I had this opportunity back in 2009, I would not have been totally dependent on my doctor calling me during the regular call hours and there would never have been a critical incident in the first place! I may not understand what all tests are for and what the specific values mean, but I can clearly see if the values are within the normal interval and I can also see historic changes. Having online access to this information is very important to me, and of course other patients taking immune suppressive medication, not only because it gives me a better understanding of my health, but also because it can directly influence my chances of staying healthy – as I wrote in the workshop contribution, I could be in danger despite the fact that I feel fine.
Last, I just want to point out that this is a personal commentary to the workshop contribution discussed above (and in this blog post) that I make as a patient. The function I was looking for has now been made available to me and many others in the Stockholm county council (many other county councils introduced this possibility before Stockholm). As should be evident to everyone following this blog, I am not only a patient with a chronic rheumatic disease but also a researcher specifically focusing on electronic health records. It is very interesting to have these two roles, enabling me two look at the research area from different perspectives! And, in case you wonder, I will not let my personal experiences affect the way I gather data and report on results – I will rather, as a researcher, let the data tell the story and then comment on it, e.g. in this blog, as a patient when appropriate.
“Back in 2006 I was diagnosed with a rheumatic disease and a few years later in 2009 I got a treatment that has worked fairly well ever since. The disease I have is auto-immune which means that the immune system attacks healthy tissue causing inflammations. The medication I take lowers the immune system to counteract this. A side effect of this particular medication is that it is easier to get sick and that it takes longer time than usual to get well after an infection.
In the beginning of the last week of June 2009, I went to one of my quarterly checkups mostly to make sure that everything was fine, and four days later I should attend a conference in Portugal. I felt fine, so I saw really no reason to call the hospital and ask for the results from the blood tests (which I always do if I’m not at good health when the tests are performed). One day before the journey to Portugal my doctor called me during the usual calling hours and let me know that more tests were needed since the immune system was at an unusually low level – obviously due to the medication I take. I then asked if it was advisable that I travelled to Portugal for the conference. The response I got both scared me and caught me by surprise – I should definitely not travel anywhere until new tests had been evaluated.”