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!

conference · DISA · DOME · eHealth · Medical Records Online · Vitalis

Today’s presentation at Medical Informatics Europe was successful!


As I mentioned in yesterday’s blog post, Åsa Cajander and I had a presentation to carry out at the Medical Informatics Europe conference today. We got 11 minutes to present (which is a really short time if you want to describe a study and its results in a good way) and we were done after 11.03 minutes! I started with presenting myself, Åsa and the DOME consortium (the image above, taken by our colleague Hanife Rexhepi, is from that phase of the presentation) and then moved on to introduce Journalen, the patients accessible electronic health record system in Sweden, and the interview study with nurses. Åsa then continued by going through the four main themes that were found during the analysis (themes related to the effect of Journalen on the nurses’ work environment and their communication with patients); “Altered contacts”, “Increased workload”, “Creates uncertainty” and “Requires new knowledge”. You can read more about these themes and results related to them in the paper which you can find a direct DOI link to here.

I concluded by highlighting some important take-away messages from the study:
• The enhanced communication, which Journalen is perceived to give, is key to shared decision making!
• Both nurses and physicians see a risk with patients accessing unsigned notes and increased workload when patients request clarifications
• There is an identified need to educate both medical professionals and patients in how to use systems like Journalen

Usually, after you have presented something at a conference, you can relax for a bit but that wasn’t the case for Åsa and me. A few rooms away, our DOME colleague Maria Hägglund presented the study Timing It Right – Patients’ Online Access to Their Record Notes in Sweden in a session parallel to ours. Luckily, we managed to switch rooms in time for her presentation. I will write a separate post about that later.

Tomorrow, I will be presenting again – this time at Vitalis. The same goes for several other DOME colleague as well as representatives from Inera. After a nice dinner with several colleagues from Uppsala University and DOME, Hanife and I had a test run of our presentation, which will take the form of a role-play contrasting physicians’ and patients’ views on Journalen. That will be an interesting experience! We have two hours (13:00-15:00 in room A5) with several short presentations using different presentation modes as well as Mentimeter questions for the audience. If you are at Vitalis and are interested in Journalen and similar health record systems, I can really recommend that session.

conference · DISA · DOME · eHealth · Medical Records Online · Vitalis

Getting ready to present at Medical Informatics Europe!


Those who follow my blog have probably noticed that I have not posted anything since the end of March. This is mostly due to an episode of my autoimmune disease. I will write more about that in a later blog post, since my situation could actually have become a lot worse if it hadn’t been for me being able to access my medical records, and most importantly test results, online before the physician had a chance to contact me about changes.

Right now, I’m actually in Gothenburg, getting ready for my first presentation at the Medical Informatics Europe conference tomorrow! As I already wrote in an earlier blog post one of the paper that I co-authored, “Medical Records Online for Patients and Effects on the Work Environment of Nurses”, is scheduled for the last afternoon session. More specifically the session will take place 15:30-17:00. If you are at the conference you will be able to listen to the presentation, which Åsa Cajander and I will hold together, in room F5.

All MIE papers are published Open Access and you can find a post-print version of the paper here. If you follow this link you will find electronic versions of all papers presented during the conference.

I’m really looking forward to this combined MIE/Vitalis conference which I think will be very interesting and it’s also great that many colleagues are joining. Several colleagues from the HTO group at Uppsala University are here and I actually just got back from a dinner with Åsa Cajander, Diane Golay and Christiane Grünloh. Tomorrow several others will join both from the HTO group and the DOME consortium. Tomorrow, I will probably also be back with another post on how the presentation went as well as on our preparations for Wednesday’s DOME session at Vitalis!


conference · DOME · eHealth · Medical Records Online · Vitalis

Looking forward to a very busy conference week at the end of April!


One month from now, at the end of April, I will have some very busy days in Gothenburg at the Vitalis 2018 and Medical Informatics Europe (MIE) 2018 events. The same goes for several other colleagues within the DOME consortium. I have already written a few blog posts about some papers and a workshop accepted to MIE and a DOME session at Vitalis. A few days ago, the MIE conference programme was published online. You can find it here (for the moment, PDF-files for the different presentation types can be downloaded).

It turns out that I will be directly involved in activities during all three conference days! This has never happened to me before – in earlier conferences I have been an active participant in a presentation or workshop one day and a more passive participant the remaining days. So, this will definitely be a challenging first-time experience!

Everything starts with the presentation “Medical Records Online for Patients and Effects on the Work Environment of Nurses” which Åsa Cajander and I will have during the last session of the first day’s (April 24) afternoon (room F5). You can read about our paper in this post. I’m glad that I will start with this particular presentation since the other ones involve many more persons and a lot more coordination. The only thing that makes me sad about this particular conference session is that it runs in parallel with another session (room F2) where the paper “Timing it right – patients’ online access to their record notes in Sweden” is presented – the other MIE-paper I’m involved in (presented here). The presentations are, however, not exactly in parallel, so maybe Åsa and I will have time to sneak out and join Maria Hägglund when she presents the “timing paper”.

During the Wednesday, I don’t have any presentation at MIE, but as I wrote in this blog post I’m joining several other DOME colleagues in a Vitalis presentation during the afternoon that day. We had a great time during our session last year and I’m positive we will have a great time together again! This time we will work with professionals to e.g. get help regarding presentation formats and framing of key messages. Wow – I’m really looking forward to see what we will come up with this time for our 2-hour session (13-15 in room A5).

During the last conference day, April 26, we have the workshop “Identifying the Need of Self-reported Data and Self-measurements for Diagnosis and Treatment of Cancer” (10:30-12:00 in room R22). The workshop and the other organizers are presented here. This is the very first workshop I have been the main organizer of, and I’m really looking forward to the experience of carrying it out this day! The topic is very important and the workshop will also be a very good test run of the setup which we will use at the larger workshop at Uppsala Health Summit later on in June. It will certainly be a challenge to run the workshop, especially after the first two days of presentations.

Everything that is presented at MIE will be published with Open Access, so I will get back to this topic again when I have links to the papers. I will of course also write about my experiences from the different presentations and the workshop as well as the conference experience as a whole. But why wait for a post about the presentations – if you are at MIE you should of course drop by and experience them, as well as the workshop, on site! 🙂


DOME · eHealth · Medical Records Online · Vitalis

Two-hour DOME session about patient accessible electronic health records at Vitalis 2018 – WE ARE BACK!


In the last couple of posts I have written about papers that will be presented by DOME researchers at Medical Informatics Europe 2018 as well as a workshop we will host during the same conference. These conference contributions are presented here. Aside from these, seminar proposals were also submitted to Vitalis, which runs in parallel at the same venue. As it turns out, DOME will once again get the opportunity to host a major session at Vitalis!

In several earlier posts, I have written about last year’s DOME session at Vitalis, which according to everyone involved was a great success. Research on patient accessible electronic health records was discussed from many different angles, and the audience was also involved through a Mentimeter solution. A summary of that entire session, with some representative images from the different talks, can be found here.

I’m really looking forward to once again join colleagues in the DOME consortium, as well as representatives from Inera, to present the latest research on patient accessible electronic health records. We will, among other things, discuss regulatory frameworks, the children’s access perspective, international perspectives, findings from the large national patient survey as well as preliminary findings from the large interview/observation/survey study with physicians and nurses I’m currently leading at the Oncology department at Uppsala University Hospital (results from this study have never been presented before!). Once again, we will also use Mentimeter for audience involvement as well as different presentation methods like e.g. role plays.

You can find the specific plans (with links to more information about the different talks) for our two-hour DOME session here (mostly in Swedish). If you are at Vitalis on Wednesday, April 25, I hope you will join us!