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!
As I have written in an earlier blog post, a paper on critical incidents and eHealth was submitted and later on accepted for presentation and publication at Interact 2017. Now our paper has been published in the conference proceedings and the presentation is coming up very soon! The full title of the short paper is “Using Critical Incidents in Workshops to Inform eHealth Design” and you can reach the paper here (page 364-373) if you (or a University you are affiliated with) have a Springer subscription. The authors are introduced in the blog post I link to above.
Christiane Grünloh, who is the lead author and the one who coordinated the entire writing process in a very good way, will present the paper at the conference tomorrow, September 27! The presentation concludes a session that focuses on Co-design studies, which starts at 1:30 PM in lecture hall 23. So, if you happen to be at the conference and want to attend her presentation about how one can utilize critical incidents to inform eHealth design you know where to go and when! 🙂
The workshop from NordiCHI 2016, on which the paper is based, was very special for me since I submitted my first research contribution from a patient’s perspective to that very workshop. That workshop contribution, entitled Making a case for easily accessible electronic health records – A patient perspective on lack of availability of health information in critical situations is not behind a paywall so if you are interested in how a patient contribution can look like you can find the paper directly by clicking on the title. It was a very interesting experience for me to use a critical scenario from my own life as a basis for discussion about how to inform eHealth design. The other papers, covering e.g. professionals’ perspectives and design were also very interesting and altogether the different contributions gave a good mix. You can find a collection of all workshop contributions here.
I usually write at least one blog post a week (usually two), but last week I didn’t post anything at all. The reason is a very bad inflammation in an eye. My contacts with healthcare, in different county councils, during last week (and the weekend before) proved to be very interesting most of all because county councils do not share patient record information. Interestingly enough, I had to use my patient accessible electronic health record to transfer important information between county councils! I will write a blog post about my experiences later this week, but since the paper I’m writing about here is to some extent about patient contributions to research I just want to point out that I now have several new ideas about real-life experience contributions based on my experiences from last week!
During the afternoon today I attended Thomas Lind‘s thesis defense. We have shared office ever since I started working at Uppsala University and this of course adds another dimension to my experience of the event. The main supervisor was Åsa Cajander and the co-supervisors were Marta Larusdottir and Bengt Sandblad. We all belong to the HTO (Health Technology & Organisation) research group.
The opponent was Netta Iivari from University of Oulu and the grading committee consisted of Olle Bälter from KTH, José Abdelnour Nocera from University of West London and Tone Bratteteig from University of Oslo. The chair was our HCI professor Mats Lind.
As always the opponent started out by presenting the thesis and putting it in context. Netta was very good at doing this and she really managed to add new dimensions to the work. After the presentation the discussion between Netta and Thomas took place. I must say that Thomas handled this situation very well – he was calm and collected and always took his time to think before he answered! The same goes for the interaction with the grading committee members. I will not go into any details about the specific topics covered, since I know another blog post about the defense will show up at our group blog quite soon. That post will surely include pictures from the defense itself.
Before I close this post I just want to highlight the very special cake, shown in the image above. As I understand it this masterpiece was home made. The top of it is actually a cake version of Thomas’ thesis!
In earlier blog posts I have mentioned a pedagogical project I was involved in, related to the use of Twitter as a communication channel in higher education courses. I have been a little vague about it, since we are still waiting for an article to be published. Pernilla Josefsson, a Ph.D. student in Media Technology at KTH who lead the Twitter study, and I started to discuss the possibility of conducting a follow-up study based on Facebook more than a year ago but we could not find the time for a new study.
Thanks to a pedagogical project course given at Uppsala University, which started September 1, we will now finally be able to start a one year pedagogical project on the use of Facebook as a communication medium in higher education! The idea behind the project course is to give teachers pedagogical course credits (= development time) to dig deep into a pedagogical development area of one’s own choice. Those who follow the course are expected to spend three weeks on the project during the period September 2017 – May 2018.
When I came to the first meeting it turned out that I was the only course participant this year! I was also quite surprised by the fact that the course responsible, Amelie Hössjer, had research and teaching interests very similar to my own. During the first meeting we discussed the idea that Pernilla and I had prepared in advance as well as e.g. course goals. Questions discussed concerned what could be measured, benefits and risks of using teacher administrated Facebook groups as well as our role as researchers – should we be one of the teachers, or even the course leader, in the studied group or should we only act as passive observers?
I have actually used Facebook groups (in which I have been the administrator) as a complement to other communication channels for several years in courses I have lead at KTH. I usually invite all involved teachers and all students directly after the first lecture. I have very positive experiences from using Facebook in this way, but I have never used the resulting communication in any research.
The next steps are for Pernilla and me to discuss the input from the first course meeting and to choose a target course. I’m really looking forward to the new pedagogical project and to once again get the opportunity to collaborate with Pernilla!
This week has been very eventful and productive, which is one of the reasons why this is my first blog post for this week.
First of all, I submitted, according to plan, two papers to the SweCog 2017 conference at Uppsala University. The title of the first one is “Using Eye-Tracking to Study the Effect of Haptic Feedback on Visual Focus during Collaborative Object Managing in a Multimodal Virtual Interface”. I wrote that together with my KTH colleague Emma Frid and it’s about a pilot study based on a collaborative version of the application described here. The other paper’s title is “Haptic communicative functions and their effects on communication in collaborative multimodal virtual environments”. I wrote this one in collaboration with my KTH colleague and former supervisor Eva-Lotta Sallnäs Pysander and it containes a short summary of our work on haptic communicative functions. If these are accepted I will present the first one and Eva-Lotta the second – I really hope we will get this opportunity to do something together at that conference! I will of course write more about this when I find out if the papers have been accepted or not.
During this week I have also worked on a workshop proposal for Uppsala Health Summit, together with my colleagues Åsa Cajander and Christiane Grünloh. The focus of the workshop is the usage of data for diagnoses and treatment of cancer. We are not entirely sure the workshop will happen, but I think changes are good. It would definitely be a great experience to organize a workshop at Uppsala Health Summit! I will of course keep you updated on the development.
And the writing activities did not end there – I’m very happy to conclude that a journal manuscript, based on a master’s thesis, is now very close to a submittable state! I spent several hours moving everything to a Latex template (some of those templates are hopeless!) and if nothing unexpected happens the manuscript can most probably be submitted next Monday if everyone is ok with it! I will write a new post about it, and introduce all authors, after submission.
I also went to some very fruitful meetings – one about the observation/interview/survey study at the Oncology department which I have been writing about before and two about a very interesting opportunity to follow the implementation process of a new feature in Journalen, the patient accessible electronic health record system in Sweden. I will be more specific later on when information has been made public.
Aside from the research activities mentioned above I also started the planning process for my department’s introductory course on HCI, which I will be responsible for this autumn, together with my colleague Mohammad Obaid. I will write a separate post about our plans for the course later.
So, a very productive work week indeed which ended at KTH, where Susanna Heyman defended her thesis in style! So I guess it’s safe to conclude that her week was quite productive as well :). The picture to this blog post was taken by me in Öregrund last Friday, on the way to our country side on Gräsö.