DOME · eHealth · Medical Records Online · Thesis defense

Recently attended Hanife Rexhepi’s brilliant defense!


Three days ago, on Tuesday 22/5, I attended Hanife Rexhepi’s thesis defense in Skövde. We are both researchers within the DOME consortium and we currently collaborate in several large follow-up studies on patient accessible electronic health records in Sweden. I arrived in Skövde a few hours before the defense and left the following day, after a very nice informal dinner.

Hanife’s thesis, which you can find here, builds a lot on the shared decision making process and the practice of evidence based medicine, and focuses on how information systems can be redesigned to facilitate communication between healthcare professionals and patients as well as access to knowledge for both patients and healthcare professionals (prerequisites for shared decision making and the practice of evidence based medicine) during the patient process. The work builds, primarily, on three case studies that include observations and interviews with healthcare professionals and patients. Through her work Hanife has been able to pinpoint several challenges, related to lack of information access (especially related to tacit knowledge) and support for shared decision making, for both healthcare professionals and patients. The work has led to, among other things, several guidelines for how to facilitate the shared decision making process as well as the practice of evidence based medicine, through supporting information systems, in an integrated manner throughout the care process. This is my short summary, but you can also hear Hanife’s own summary in the short interview (in Swedish) presented here.

Hanife did an excellent job during all parts of the defense! Before the defense, she was given the choice to either present the thesis herself or let the opponent do it. Since she chose to do it herself, the first 45 minutes were devoted to Hanife’s very professional presentation of her thesis work. I really enjoyed listening to it – the presentation was clearly structured and she really managed to use the outcome of the many projects she has been involved in to draw attention to important problems. She showed great confidence and she wasn’t afraid to use humor, at appropriate occasions, to make her points.

After the presentation, Hanife discussed her thesis work with the opponent, professor Peter Bath. I must say the she did an exceptionally good job during this part of the defense process! I have been to numerous defenses during my years in research and I have never before seen a doctoral student handling this discussion with such confidence and calmness. The opponent’s questions were really well thought-out and Hanife always had good answers and really took her time explore the questions in-depth. Sometimes she even drove the discussion. It was really a pleasure to listen to the discussion part of this defense!

After a little more than an hour’s discussion, the grading committee asked a few questions and Hanife also handled this part with ease. The same goes for the questions from the audience.

During my time at KTH (more than a decade) I was responsible for courses in communication and research rhetorics, so I know what I’m talking about when I say that it is very unusual to come across someone with such a good set of communication skills (including both written and verbal communication). I’m really happy that I was able to come to Skövde and experience this in real life!

conference · DOME · eHealth · Medical Records Online · National patient survey

Presentation at Medical Informatics Europe about when to provide access to new information in patient accessible electronic health records


As I wrote in an earlier blog post, two papers on which I was a co-author were presented in parallel sessions during the first day of the Medical Informatics Europe (MIE) conference. Luckily, Åsa Cajander and I managed to switch rooms, after our presentation, before Maria Hägglund started hers. Maria’s presentation of the paper “Timing It Right – Patients’ Online Access to Their Record Notes in Sweden” was also about work performed within the DOME consortium, but it focused more on the patient accessible electronic health records system (Journalen) as such and on when new information is presented for the patients to see.

Maria started off by giving a thorough overview of Journalen as well as the national patient portal where patients e.g. can, apart from logging in to Journalen, contact care providers electronically, book times and check as well as renew medication prescriptions. As can be seen in the blog picture above, Sweden’s independent regions are responsible for healthcare and as a consequence there are some differences regarding e.g. which health record systems are used and what policies are followed when it comes to information presented in Journalen.

After introducing Journalen and the national patient portal, Maria continued by discussing the Swedish National Regulatory Framework and especially the part concerning when patients get access to new information (e.g. lab results or visit notes). The big issue here is that each independent region or healthcare provider can make a choice (electable paragraphs) if they want to give patients immediate access to new information or not. The alternative is to use a two weeks delay. The different providers and regions can also choose whether or not patients get access to unsigned notes/results. The obvious consequence of the electable paragraphs is differences between different county councils, regarding when patients get access to information in Journalen.

Towards the end, Maria also revealed what the patients say about waiting times. Results from the national patient survey show that the majority of patients want to see new information in Journalen within a day and only about 20% think that a two week waiting period would be ok. This is interesting to relate to the fact that the majority of the county councils have chosen to use a delay period of two weeks for unsigned notes (in the survey, the patients were informed about that new information presented in Journalen within a day will most probably not yet be signed by a physician, but they still wanted quick access).

If you want to know more about this study, you can find the open access full paper here.


conference · DOME · Medical Records Online

About our workshop on data for diagnoses and treatment of cancer, at Medical Informatics Europe

Isabella (2)

Last Thursday, Isabella Scandurra, Christiane Grünloh and I ran the workshop “Identifying the Need of Self-reported Data and Self-measurements for Diagnosis and Treatment of Cancer” at the Medical Informatics Europe (MIE) conference in Gothenburg. I introduced the workshop in this blog post some weeks ago. The workshop was held in the time slot 8:30-10:00 in parallel with other workshops and sessions at Vitalis and MIE. This is probably one of the reasons why we unfortunately only had five participants aside from ourselves. But nevertheless the discussions in the small group were very interesting and the outcome can surely be used to develop scenarios of how we want to utilize e.g. self-tracking data from patients for diagnoses and treatment of cancer in the future.

Christiane started by presenting the schedule and introducing the general idea with the workshop – to develop future scenarios related to usage of self-reported and already existing data in cancer treatment, informed by real-life critical incidents. Before we started the group discussion two critical incidents were presented – one by Isabella and one by me. I really think it was great that we could use personal scenarios instead of just using another person’s story.

The picture above is from Isabella’s presentation of her critical incident, related to medication and side effects. During a recent chemotherapy treatment, she constructed her own charts with data about medication (type, time, amount, etc.) – data that is not accessible to anyone else. This data could potentially be very useful for other patients getting similar treatments and would probably also enable e.g. better follow-ups by healthcare professionals. It’s also quite common today, that patients take notes on e.g. side effects of medications, but there is really no good way of transferring this information to other stakeholder. Thus, Isabella’s critical incident related to possible use of data which is currently not accessible to key healthcare stakeholders.

My critical incident, on the other hand, related to lack of access to lab results. In some earlier blog posts, I have written about my autoimmune disease and the immunosuppressive medication I take. The problem with a low immune system (in my case induced by the medication) is that you don’t realize the problem until you get some kind of virus or, even worse, bacteria infection. The critical incident I presented focused on a scenario where my physician called me the day before I should travel to a conference and told me that my immune system was very weak (=I couldn’t travel anywhere). Since I felt perfectly fine and was more than ready to leave, I cannot help wondering what might have happened if I had missed that call… You can read more about this incident here and I will soon write another post about the opposite scenario – about when online access to my medical record definitely saved the day (and probably the month)!

After the critical incident presentations, I shortly introduced how we wanted to work with scenarios and after that we started the discussions based on the presented critical incidents as well as the other participants’ personal experiences. Since we were so few, we did not derive any actual scenarios, but rather discussed what type of data that is currently underused and how we should collect and work with that data. Several important points were brought up during the discussion, which focused a lot on the type of critical incidents that Isabella had presented. One key theme in the discussion was that we need to make much better use of information which is collected and written down manually by patients. This type of data is not collected today and this is a problem, both when it comes to treatment efficiency and research. One idea was to provide a platform to enable the patient to add this information digitally and another to let the patient submit information through voice input. In both these cases we most probably have legal issues to deal with and we also have the usual challenge with unstructured and anecdotal data. Towards the end of the discussions, I think we ended up with an idea that could actually work and that could contribute to a more efficient cancer treatment! I definitely think we should discuss the possibility of basing a Vinnova application on it.

Before we closed the session, Christiane also told everyone about our upcoming workshop at Uppsala Health Summit. Several of the participants seemed interested in it, so I hope we will meet at least some of them at the summit later on in June!