DOME · eHealth · Medical Records Online

My first workshop contribution from a patient’s perspective!

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Yesterday I participated in a full day workshop, organized by members from the DOME consortium, at NordiCHI (the organizers are presented here). The name of the workshop was: “Designing E-Health Services For Patients & Relatives – Critical Incidents and Lessons to Learn” and I mentioned it briefly in my previous post. I want to point out that I will only focus on my own contribution and the work process here. All presentations held during the workshop were very interesting and interested readers can find all position papers here.

 

My contribution

I contributed to this workshop mostly as a patient, since I wanted to take the chance to bring a real life experience into the discussion at the workshop. This is an excerpt from the scenario my workshop contribution was based on:

“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.”

My presentation during the workshop and the poster were both centered around two basic problems. The first one was the health issue – I was feeling fine the entire week on which the scenario was based and had no idea I was in any danger until the doctor called. The effects could have been detrimental if the doctor had called after I had left for the conference and I used this fact to make a case for easily accessible electronic health records. The other problem I focused on was more about the research on eHealth services and then especially patient accessible electronic health records. There are a lot of papers out there that focus on problems that physicians see with the system and recently papers have also covered studies on patients and their use of eHealth services. There are, however, still few research contributions made by patients and there are even fewer contributions that focus on the effects of not having access to electronic health records.

I felt that my contribution was well received and it seemed like the patient contribution added a unique aspect to the workshop – something that was pointed out at several occasions. An interesting idea that was brought up by one of the other workshop participants was to develop some kind of alert system that could warn a patient when a test result is way above or below the normal interval. Another idea was that patients taking immunosuppressive medication, which can put patients in danger without them ever realizing it, could use a device to draw minimal amounts of blood themselves in order to check the blood status.  The entire position paper can be found here.

 

The workshop

The workshop was very well organized and everyone was active during the entire event. This is the first workshop I have been to that used posters for the presentations of the position papers. Most other conference workshops I have been to have used Powerpoint as the presentation medium and that can get quite tiresome after a while. Using posters was a very good idea, since active participation could then be promoted. In this particular case the presentation format enabled the possibility to add post-it notes to the posters.

During each presentation the other participants had four stacks of post-it notes (each in a different color) in front of them. On these post-its they should add comments related to the areas “Enablers”, “Barriers”, “Learning opportunities” and “Other” respectively. After the presentation the post-it notes were placed on the poster. The image above shows the status of three of the posters after the presentation rounds. This format forced everyone to remain active during each presentation.

In a later phase of the workshop the participants split into two groups focusing on their own set of posters. Each group should pick post-it notes from the respective posters and formulate design implications for future eHealth services based on these notes. This also promoted active participation and most of all discussion since the implications formulated should be based on a joint decision.

Overall the workshop was a success and the quite novel format with posters really worked both since they promoted active participation and since the posters served as shared reference points during the entire event. From the discussion at the end it is obvious that everyone else were of the same opinion and that everyone believed that it was a good idea to work with critical incidents in this way to inform design. The concluding discussion also brought up the possibility to work together in the future, for example in publishing activities, and I really hope that we will get the chance to do that!

 

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