conference · Uppsala Health Summit

Uppsala Health Summit 2018, part 1: time to start discussing some tuff questions related to cancer care!

Debattbild

As I have written before on this blog, I have been involved in this year’s version of Uppsala Health Summit with the theme “Care for cancer”. See this blog post, for an introduction about the summit and the workshop that I co-organized together with my colleagues Åsa Cajander and Christiane Grünloh. Apart from co-organizing the workshop on the use of data for better cancer treatments, I was also a member of the program committee.

This is the first post in a blog series I will write during the summer, about the content of the summit and the preparatory work performed by the program committee. My intentions are mainly to raise awareness about the summit as such (a yearly event with different themes each year) and to highlight some important challenges, as well as opportunities, related to cancer care that were brought up during the summit.

This year’s program committee consisted of researchers (mostly professors) from a wide range of fields related to cancer care (e.g. oncology, physiotherapy, bio informatics, precision medicine and pharmacy) and all members also represented a workshop focused on their respective fields. You can read about all the workshops here. It was really interesting to take part in the meetings where the program was decided upon, even though many of the topics discussed were outside my main research field. I will get back to my experiences from the program committee work in a later post in this series.

One of the last things we did in the program committee was to agree on the content of a debate article that was published the same morning as the summit started. Our goal with the article, which was signed by all members of the program committee, was to highlight some tuff questions related to cancer care and to raise awareness about the summit and about some key challenges that we are facing. One of the important take-home messages is that we need to find international collaborations regarding e.g. bio banks, rare tumor diseases, data sharing, etc. – the challenges are global and should be tackled as such! I will get back to the global perspective on cancer care in later blog posts in this series. I’m really pleased with the article and I really recommend you to read it. You can find the link here (unfortunately, there is only a Swedish version).

I will be back soon with the second part in this blog series, where I reflect on the overall organization of this year’s Uppsala Health Summit, so stay tuned!  🙂

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

MariaPresentation2

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!

MIE_nurses_presentation

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!

MIE_nurses

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!

MIEVitalis_presentations

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! 🙂

 

conference · Pedagogical development · Pedagogy · Social media in higher education

Presented a poster on the use of a teacher administrated Facebook group in a university course

TUK_Poster

A few weeks ago, Pernilla Josefsson and I got an abstract for a poster accepted to an annual pedagogical conference at Uppsala University (TUK 2018) and today I presented that poster at the conference. The poster is based on work performed within the 3hp pedagogical course which I’m currently taking at the university. I introduced the course last autumn in this blog post.

The basic idea with the project is to study how a Facebook group affects student and teacher roles as well as the communication both between students and between students and teachers. As in several earlier courses I have been responsible for, I invited all teachers and students to join a Facebook group in the beginning of the course. The only difference this time is that I conduct research on the communication. The poster, shown in the picture above, presents some basic facts about the setup, which methods were used and also some preliminary results. A lot more can be done in terms of analysis, so this is certainly not the last research contribution that will come out of this study!

Here is the abstract we submitted in order to get the poster accepted:

A Facebook group was used as a complementary communication channel during a course in human-computer interaction, autumn 2017. All 63 students and three involved teachers were invited to the group right before the course started. This was done within the scope of a pedagogical study aiming at investigating how a teacher administrated Facebook group affects student and teacher roles and communication between students as well as between students and teachers. The study included a pre-survey on social media literacy, collection of posts and user reactions, and a post-survey eliciting student attitudes towards Facebook as well as opinions about the use of Facebook during the course. Posts and comments were analyzed using a content analysis approach. 48/63 students chose to join the group and of these 40 were active participants. Most student posts and comments concerned the ongoing project work and logistics.

I really enjoyed attending the very well arranged conference, and in the next blog post (or maybe two posts), I will discuss some of the points brought up in the keynotes, paper sessions and plenary talks. Both some of my colleagues in the HTO group at Uppsala University and I will also write about the conference – and especially our own contributions – on our HTO blog in the near future. So, if you want to know more about what we are involved in regarding pedagogical development (or other research) you should also check out that blog.