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

New article published about cancer patients’ attitudes towards and experiences with patient accessible electronic health records!

A few days ago an article based on the national patient survey study on patient accessible electronic health records in Sweden was published in Health Informatics Journal. The article, “Online electronic healthcare records: Comparing the views of cancer patients and others” focuses on differences between cancer patients and other patient groups when it comes to attitudes towards and experiences with patient accessible electronic health records (PAEHRs). The areas covered in the article are, among others, involvement in the care process, communication with healthcare professionals and reasons for using PAEHRs. In total, 2587 patients answered the survey and 347 of the respondents had a cancer diagnosis. My colleague Hanife Rexhepi, from University of Skövde, led the work with this sub-study together with me. Our colleague Isto Huvila, from Uppsala University, also took part in the work.

In the article we present several findings from one of the very first large follow-up studies in Sweden about the effects of PAEHRs for cancer patients. Some of the key results are:

  • Cancer patients are generally very positive towards the possibilities that PAEHRs offer
  • Cancer patients use the PAEHR for getting an overview of their health status and for preparing for doctor’s visits to a significantly higher degree than other patients
  • Cancer patients experienced, to a significantly higher degree than other patients, that the PAEHR has helped them in their communication with medical staff
  • Cancer patients discuss the PAEHR and its content with medical staff to a significantly higher degree than other patients
  • Cancer patients experienced, to a significantly higher degree than other patients, that the PAEHR has a positive effect on their involvement in the care process.

The article is published open access here, where you can find more results and details about the study. As usual, a press release will also be published about the study – this time by Örebro University. If you want to read about some overall results from the national patient survey (not focusing on e.g. specific patient groups) I recommend you to read this open access publication. You can also read about results regarding effects of PAEHRs on the work environment of oncology healthcare professionals here.

Here is the recently published article’s abstract:

This study investigates differences in attitudes towards, and experiences with, online electronic health records between cancer patients and patients with other conditions, highlighting what is characteristic to cancer patients. A national patient survey on online access to electronic health records was conducted, where cancer patients were compared with all other respondents. Overall, 2587 patients completed the survey (response rate 0.61%). A total of 347 respondents (13.4%) indicated that they suffered from cancer. Results showed that cancer patients are less likely than other patients to use online electronic health records due to general interest (p < 0.001), but more likely for getting an overview of their health history (p = 0.001) and to prepare for visits (p < 0.001). Moreover, cancer patients rate benefits of accessing their electronic health records online higher than other patients and see larger positive effects regarding improved communication with and involvement in healthcare.

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

Getting ready to present at The International Symposium for Health Information Management Research (ISHIMR)!

During early spring 2020 my colleague Hanife Rexhepi, from University of Skövde, submitted a paper to the 18th International Symposium for Health Information Management Research (ISHIMR 2020). The title of the paper is: “Do you want to receive bad news through your patient accessible electronic health record? A national survey on receiving bad news in an era of digital health”. I am a co-author together with Isto Huvila from Uppsala University and Rose-Mharie Åhlfeldt from University of Skövde (see blog picture above). We are all members of the national DOME consortium and have worked together many times before.

In the paper, which was accepted to the conference, we focus on results from a national patient survey on attitudes towards and experiences with patient accessible electronic health records. Questions of particular interest for this paper concerned means by which patients get bad news about their health and how they want to get such news, respectively. Interestingly enough we found, among other things, that a much higher proportion of patients want to receive bad news by reading online in the patient accessible electronic health record, than those that get bad health news in that way today. We found some significant differences when comparing demographic groups, but I will not go into any detail here, since the paper will be published open access after the conference (I will provide a link when it has become accessible.

The original idea was to have the conference on site in Kalmar, Sweden, September 17-18. But due to the Covid-19 pandemic it was decided in April that everything should move online. We are all getting used to online meeting and conference settings, so I’m sure it will work out in a good way. We actually had a kind of rehearsal (without complete presentations) just a few days ago to do some sound checks and try out the screen-sharing feature in Zoom. Most of us did not experience any problems. A few weeks ago Hanife and I also recorded a video with our presentation. Hopefully, we will be able to present live Friday next week, but in case we have technical problems they will show our video instead. After the conference I will write a new blog post where I will share that video!

You can find the complete conference program here including topics and titles of all papers. As you can see there, the paper I am co-authoring is not the only paper written by researchers from the DOME consortium. Diane Golay, who will have the very first presentation during the conference, is also a colleague of mine, from Uppsala University.

Here is the abstract of the paper I’m co-authoring and presenting:

Despite the fact that patient accessible electronic health records (PAEHRs) have been around for many years in several countries, there is a lack of research investigating patient´ preferences for receiving bad news, including through PAEHRs. Little is also known about the characteristics of the patients who prefer to receive bad news through the PAEHR in terms of e.g., medical diagnosis, age and educational level. This study, based on a national patient survey in Sweden (N=2587), investigated this. Results show that, generally, receiving bad news by reading in the PAEHR is still among the least preferred options. Additionally, a higher proportion of men want to receive bad news in the PAEHR compared to women (p=0.001) and the same goes for those who are not working/have worked in healthcare (p=0.007). An effect of disease groups was also found, showing that diabetes patients in particular want to receive bad news through the PAEHR.

communication · Course · Human-Computer Interaction · Pedagogy · Popular science

Time to start writing another popular science book chapter!

In the middle of August my colleague Ann-Sofie Hellberg and I submitted a proposal for a popular science book chapter, hoping that it would be considered for inclusion in a book focusing on digitalization of education. A few days ago we got a notification that our proposal had been accepted, so now it’s time to start writing the real chapter!

The book will include several short chapters written by teachers all around the world and the focus will be on experiences with and evaluations of digital learning. As I wrote in this blog post quite a while back, I have contributed to a chapter in the popular science book Digitalisering av högre utbildning [Digitalization of higher education]. That time around I wrote about experiences from using Twitter as a complementary communication channel in a course in communication that I held at KTH. This new book seems to be very similar, since teachers are writing for teachers.

We have not decided on the details yet, but the book chapter will focus on experiences with teaching a course in interaction design online and a special emphasis will be placed on support for communication between course participants. I will of course get back to this as work progresses. Hopefully, the complete version of the chapter will be included in the upcoming book.

Further on, we will also produce at least one scientific publication about the experiences of teaching project courses online, but interviews with some students will be needed as additional input before that work can start. The work with the scientific publication will be a part of the overall research effort around effects of Covid-19 on education at the department of Informatics at Örebro University.

conference · eHealth · Vitalis

Recently participated in digital Vitalis 2020!

Tuesday and Wednesday this week I participated in this year’s Vitalis conference which was held in digital form because of the situation with Covid-19. Vitalis is the largest eHealth event in Sweden. I have never participated in a large digital event before, so it was really an interesting experience. Usually, the event is held in Gothenburg during three days in May every year and I have participated in the regular, on site, events two times. In this blog post I summarize one of the presentations I was a part of during an earlier year at Vitalis. This year it was unfortunately not possible for me to participate as a presenter due to technical difficulties, but it was still rewarding to participate.

This time around, most of the content was pre-recorded by the respective presenters, but the scheduling in parallel sessions throughout the days was similar to before. During the conference the pre-recorded sessions were run only when they were scheduled in the program, but soon all the recordings will be made accessible on the conference homepage and can be viewed until the end of the year. Around 240 presentations in total were pre-recorded. This was a really interesting setup for a digital conference – the original parallel sessions held in different “rooms” were kept during the conference days, but afterwards you can go back again and listen to particular passages that really sparked your interest or listen to sessions you could not participate in during the two conference days. Could this be a setup also for conferences held on site? Towards the end of the conference the business manager of Vitalis hinted that recordings of presentations might be used in future versions of the conference as well. An interesting comment related to this that came up during an interview was that this kind of setup enable a continued discussion about the specific presentations that would not be possible when only watching a presentation on site. Of course, there is usually some room for questions from the audience after every conference presentation, but now when all the material is available online there is more time for other interested participants (also for those who missed the session that you were in) to engage with your material and comment on it.

And when it comes to overall communication another interesting feature was a chat function which could be used to engage real time with the current presenter about the presented material. A prerequisite for this to work was of course that the presenter was in the chat room during the scheduled time. Even though this is not the same as discussing verbally and meeting in person, it still enabled a valuable opportunity for real time communication. There was also a chat available outside of the virtual presentation rooms enabling ongoing discussions about the conference and the large digital exhibition.

Aside from the pre-recorded presentations just mentioned, there were also two live channels running in parallel. Those channels showed the introductory keynotes and four panel discussions each day. Between the panels there were also follow-up discussion in a special TV studio. This TV studio was a really nice feature that in a way stitched everything together by taking a broader perspective on the themes brought up during the conference and especially the panels. There have not been any follow-up discussions during earlier Vitalis events. Johan Wester, who is a Swedish comedian, actor and moderator, led the studio activities in a very good and entertaining way. There were obviously a lot of material to choose from, so I’m very happy about the fact that I now have access to all the presented material for a few months ahead. I chose to follow the live channels and will consequently go back and listen to pre-recorded presentations later on. Among other things, I listened to interesting panel discussions about how the Covid-19 pandemic has speeded up, and by other means affected, the development and uptake of eHealth solutions, how digitalization can support and also renew social care and how current laws and regulations are actually hindering the implementation of new eHealth solutions. One aspect in particular that I liked with the panels I listened to was that all of them included at least one patient representative! It is really important to include the patient’s perspective in eHealth conferences and Vitalis really managed to do that in a good way both in the panels and the TV studio. I will come back to this and some of the sessions in later blog posts.

Since all material from Vitalis is online and accessible for the remainder of this year, it is actually still possible to register for the conference. You can get access to everything by buying a ticket here. If you are interested in state-of-the-art when it comes to eHealth in Sweden I would really recommend buying a ticket.

communication · eHealth · Grant application

New project grant application submitted to AFA!

A project grant application, where I am one of the co-applicants, was submitted to AFA Insurance yesterday! A lot of work has been done on the application and it has been submitted (and, unfortunately, rejected) one time before. The following partners are involved (I will be more specific when the application has gone through the process):

  • University of Skövde (the partner in charge)
  • Örebro University (I’m the representative from here)
  • Uppsala University

The main research area of the application is eHealth, but the focus is not on patient accessible electronic health records this time. We have tailored the application more towards the Covid-19 pandemic and how digital technology could be, and should be, used when communicating with dying relatives without being able to meet in person.

I’m not sure when we will get an accept/reject decision from AFA, but it will at least happen before we leave 2020, since most of the funded projects will most probably start in the beginning of January.

Grant application · Group work · Haptics

Finally working with haptic interaction design again!

As I previously mentioned in this post I am co-applicant of the Vinnova-funded application “Virtual environments supporting group work between sighted and visually impaired pupils”, which officially started in late autumn 2019 and will go on until summer 2021. I’m really happy about this project for several reasons. Most and foremost, the project makes it possible for me to really engage in haptic interaction design again (I have not done research in that area during the last couple of years) and the application was also the first one for which I managed to attract external funding (hence, a very important milestone in my academic carrier).

The project consists of a couple of main phases:

  1. A pre-study where we investigate the situation that visually impaired pupils face in school today, especially in collaborative situations. One of the important focus points here has been to find out which school subjects we should focus on.
  2. Iterative prototype development, focusing on haptic and audio technology, where we follow a user-centered design approach.
  3. Evaluations in schools, where groups of pupils will solve some prepared school assignments with the developed application.
  4. Development of guidelines for designing, evaluating and using virtual learning environments that support group work between sighted and visually impaired pupils.

I will take part in all project phases, but will devote most of my project time to the iterative prototype development and the development of the final guidelines. Unfortunately, Covid-19 has caused quite a lot of trouble for us especially in the first project phase where we had to make adjustments. I was really looking forward to the planned observation activity, where I, together with some other project members, should visit some selected schools to observe group work between visually impaired and sighted pupils. This type of activity is one of the most valuable when it comes to understanding the users and their environment. But we had to let go of this activity altogether. All interviews with e.g. pupils and teachers will also be conducted online, which is of course far from ideal.

This being said, the most important thing is that we still have a way to interact with pupils and teachers. We also have a very good collaboration between the project members representing academia and the project members representing Axess Lab (a company division focusing on digital accessibility from numerous perspectives), The Swedish Association of the Visually Impaired and The National Agency for Special Needs Education and Schools (SPSM), so I’m absolutely sure we will be successful in the end.

Currently, I’m working on the first prototype of our virtual learning environment and I’m really enjoying it. The setup is not exactly as I planned, though, also as a consequence of Covid-19. Since I take immune suppressive medication it’s not a very good idea for me to go to Örebro University or to live in towns like Stockholm for long periods of time, so I have been living at my countryside, at Gräsö, since beginning of March. Since prototype development had to start, we made the decision to move all equipment (including haptic devices and the new project computer – all prepared by my colleague Jonas Forsslund) to my countryside! You can see an example setup in the blog image above.

It’s maybe not the best setup, but it definitely works and I’m making progress. I will of course write more about the prototype development and the other phases of the project later on. So stay tuned  🙂

Course · design · Teaching

Looking back at my first year as assistant professor, part 3: teaching

As I have mentioned earlier, my position includes 70% research and 30% teaching. During this first year the teaching part was somewhat reduced due to the Vinnova-funding I got, but I could still be involved to quite a large extent in two courses.

My first teaching assignment was to supervise and then examine five theses on the bachelor level. I was very comfortable with that task since I have supervised around 50 informatics related theses at KTH and thus have a lot of experience in the area. There were quite a few similarities between the processes followed for degree courses at KTH and Örebro University, but also some interesting differences. One of those differences was the collaboration between all supervisors involved in the course. At KTH there was no formal collaboration between different supervisors, but at Örebro University (or at least at the Informatics department) all involved supervisors gathered in a joint meeting to discuss all project proposals before the first meeting with the students. I really liked this approach – it was very rewarding to be able to discuss e.g. challenges with the respective project proposals before the supervision started. I will write more about the supervising experience later on (this is more of a summary post).

The examination experience was new to me. Previously, I have suggested grades to the examiners for the projects I have supervised (and the examiners always followed my suggestion), but I was never really formally responsible for the grading. After the last supervision seminar with the students, all the involved supervisors switched roles and became examiners instead. This was a very interesting setup! For me this meant that I was assigned five student groups that I should examine (not my own groups, of course). This included leading presentation/opposition seminars and grading the final report. I will surely get back to this in a later blog post.

The other course I was involved in, this time as the course responsible, was a course in interaction design. I have been responsible for such courses both at KTH and Uppsala University and I really enjoy teaching these kinds of creative project based courses. The course started in May but I started planning already in January. Among other things, I wanted to incorporate some components that I had used at KTH and Uppsala University. Among other things, I wanted to add a creative prototyping session where students should use different materials to physically build low level (low-fi) prototypes of new systems (see this blog post for a description of such a session). I also wanted to end the entire course with a design final where finalist groups should have short presentation and an invited jury should choose a winner. Unfortunately, because of Covid-19, none of those things could actually be implemented in the course. Instead, I had to rethink most parts of the course and prepare it for online-only teaching! That is certainly not ideal for this type of design course. How I transformed the course will be a topic for later blog posts and in fact also a topic for pedagogical research – a proposal for a popular science book chapter, focusing on online interaction during e.g. seminars in two courses (one is interaction design) has already been submitted!

(I took the blog picture above in Abisko a few years ago)

communication · conference · eHealth · Medical Records Online · Pedagogical development · Pedagogy · Social media in higher education · Time management

Looking back at my first year as assistant professor, part 2: publications

In my last blog post I provided a short summary of research activities I have been involved in during my first year as assistant professor in informatics at Örebro University. I will now follow up on that post with a summary of the publications I have been working on during the same period. When I started my work around a year ago I decided to try out a new way of planning my time. I present the approach I tried out in this blog post (I’m still following the approach). When it comes to research, the approach I have been following (with a few exceptions) is to conduct research in the afternoons (grant application writing, data collection/analysis, etc.) and to work on manuscripts (can be both scientific and popular science) before lunch during at least three days a week. The number of days I devote to research/manuscripts of course depend on my current teaching duties. This approach has resulted in many research contributions being submitted and accepted/published during this past year. Thus, the scheduling approach followed has worked very well.

Journal publications

During this past year two new journal articles, where I am one of the authors, have been published and another one will be published within a few weeks. These are the published publications (both are open access and can be found by clicking on the title link):

Initial versions of both these articles were submitted before I started working at Örebro University, so the work on these articles mainly consisted of handling revisions and the work required after acceptance of the manuscripts. The first article above is more thoroughly presented in this blog post and I will write a separate post about the second paper later on this autumn. Moll and Cajander (2020) was published online already in 2019.

The following paper has been accepted for publication in Health Informatics Journal:

  • Rexhepi, H., Moll, J., and Huvila, I. (forthcoming). Online electronic healthcare records: comparing the views of cancer patients and others. Health Informatics Journal.

This is a paper that I have worked on quite a lot during this past year and the first version was submitted a few months after I had started working at Örebro University. You can expect a blog post and a press release when it has been published online!  🙂

Aside from working on the above mentioned papers I have also worked on other journal manuscripts focusing on eHealth, multimodal interaction and social media in higher education. One paper related to eHealth is already submitted and another one is soon ready to be submitted. In total, work has been done on nine journal manuscripts (including the ones already published/accepted that are listed above).

Conference papers

Quite a few conference papers have also been published/accepted during the last year. These three have already been published (follow the links to reach the open access publications):

I have covered the first paper in this blog post. The other two were published during the summer, so I haven’t found the time to write posts about them yet – posts about these will be published soon. I had really looked forward to actually going to the conferences with my co-authors to present the work performed but Covid-19 destroyed those plans. 😦

Aside from the above mentioned conference papers I also worked on some contributions that have been accepted but not yet published. Those are the following:

  • Rexhepi, H., Moll, J., Huvila, I., and Åhlfeldt, R-M. (forthcoming). Do you want to receive bad news through your patient accessible electronic health record? A national survey on receiving bad news in an era of digital health. The International Symposium for Health Information Management Research (ISHIMR) 2020.
  • Wistrand, K., Moll, J., Hatakka, M., and Andersson, A. (forthcoming). Improving Writing Skills Among Information Systems Students: Guidelines for Incorporating Communication Components in Higher Education. Frontiers In Education (FIE) 2020.

As before, I will present the contributions more thoroughly in separate posts when they have been published.

One popular science conference contribution has also been accepted:

  • Moll, J., Josefsson, P. (2020). Sociala media som komplementär kommunikationskanal i högre utbildning – vilka möjligheter och utmaningar finns det? [Social media as complementary communication channels in higher education – which opportunities and challenges are there?] Discussion session accepted to Nätverk och Utveckling (NU) 2020.

I will write about this one in more depth when we are approaching the (online) conference in October.

(The blog picture is once again one of my own.)

DOME · eHealth · Grant application · Haptics · Medical Records Online · Pedagogical development · Teaching

Looking back at my first year as assistant professor, part 1: research

I started my work as an assistant professor in Informatics at Örebro University August 1st 2019, and I’m now taking this opportunity to shortly summarize the first year. Usually, I link to earlier blog posts when I write summaries, but this very special spring term with online teaching and 100% distance work actually made me forget to use the blog.  😦

This post will be about research activities (excluding publications, which will be covered in the next summary post).

When it comes to research, quite a lot has happened during this first year. Those who have been following this blog for a while have probably seen that I have been trying to get research funding from different sources, sometimes as main applicant and sometimes as co-applicant, since I started as a postdoc at Uppsala University. After several rejects during the period 2015-2019 I finally managed to get some external funding from Vinnova! I write about the project, which focuses on developing digital learning tools for collaboration between visually impaired and sighted pupils in school, in this and this blog post. My next blog post after the summary posts will also be about this project (I know I haven’t written that much about it yet).

As it turned out, the Vinnova application was not the only project grant application (where I was one of the co-applicants) that got funded during this last year! Together with several of my colleagues in the DOME consortium, as well as partners focusing on eHealth in Norway, Finland, Estonia and the USA, I worked on a NordForsk application during Autumn 2019 and early spring 2020. One of my colleagues from Uppsala University, Maria Hägglund led the work. In May we got a confirmation from NordForsk that the project will be funded. The project title is “Nordic eHealth for Patients: Benchmarking and Developing for the Future” and it will start in January 2021. I’m really looking forward to this important research which will go on for three years!

I have also worked on some applications that came to be rejected. One of them (a draft) was submitted to Forte (Swedish Research Council for Health, Working Life and Welfare) and one was submitted to AFA Försäkringar. Both focused on eHealth solutions for patients. Actually, two drafts were submitted to Forte and one of them, for which Maria Hägglund led the work, was accepted. Since this means that a complete application could be submitted just before summer we don’t know yet if we will get funding or not.

Aside from working with grant applications and the above mentioned Vinnova-funded project, I have also worked on some internal projects at the Informatics department. One of those projects focuses on eHealth and more specifically the introduction of video visits in primary care in Region Örebro. My colleague Gunnar Klein leads the research which is currently not funded (although, we will try to fix that issue soon). A first research task – a survey distributed to healthcare professionals – has already been carried out and several other activities, involving both patients and healthcare professionals, have also been planned.

The other internal project I am involved in focuses on education and more specifically on the changes made in our courses in Informatics as a consequence of the ongoing Covid-19 pandemic. In March it was decided that all teaching should move online (including all examinations) – a transition that was far from easy. I was lucky enough to get around 1.5 months to prepare for my course in interaction design, but some of my colleagues had to transform ongoing courses from campus based to online! I will write more about my course in interaction design in a later summary post. This internal project, which will focus on e.g. different courses, examination types and levels of educations, and where both teachers and students will be involved, is coordinated by me (although I must say that it has been extremely complicated to coordinate this when we can only meet online!).

The activities mentioned above are the main research activities I have been involved in since I started working at Örebro University. In the next summary post I will write about the publications that have been published and accepted during the last year.

(I took the blog picture above at my countryside a while ago)

DOME · eHealth · Medical Records Online · Popular science · Vitalis

Time to finalize the preparations for yet another joint DOME/Inera session at Vitalis!

DOMEatVitalis

This year, I helped out with the overall planning of a two hour session, which researchers from the DOME consortium and representatives from Inera AB plan to have at the eHealth conference Vitalis later on during the spring. We have had these joint sessions at Vitalis, all focusing on different aspects of the patient accessible electronic health record system in Sweden (Journalen), for several years now and as always my Örebro University colleague Isabella Scandurra has been the driving force. This year’s session, which was planned in 30 min slots, was recently accepted for inclusion in the conference program. Vitalis is an annual eHealth event held in Gothenburg, Sweden.

The first part of the session is called “Hur använder en spetspatient Journalen?” [How does a lead patient use Journalen?]. This part will focus on how patients can use Journalen to manage their healthcare. Role-plays will be mixed with presentations here. I will participate in this part, as one of the patients, and I will share some of my own experiences of using Journalen. Other lead patient representatives will share some of their stories as well.

The next part is called “Vad klagar patienterna på? Vad berömmer de?” [What are the patients complaining about? What are they praising?]. Here we will discuss feedback on Journalen from patients as well as benefits and problems in relation to different disease groups.

The third part is called “Panel med vårdpersonal: Hur jobbar du med Journalen?” [Panel with healthcare professionals: How do you work with Journalen?]. This part of the session will focus on experiences and opinions that invited healthcare professionals have related to using Journalen in their work (e.g. during interaction with patients).

The last part is called “Panel med “Unga experter”: Hur ser du på ungas användning av Journalen?” [Panel with ”Young experts”: How do you view young people’s use of Journalen?]. In this part, a panel with representatives from a network of young patients will share their views of Journalen in a panel setting.

I’m really happy with the content in this year’s session and with the variation of activities performed on stage – a mix of role plays, presentations and panels. The session will be held 13-15 during the first conference day (Tuesday, May 5th). You can see the entire program here. In the program you can see a more thorough description of the session as well as who will be involved in which part of the session. I will get back to this in a later blog post when the plans for the session have been finalized. If you want to see an example of a DOME/Inera session from an earlier year, you can read this blog post from 2017.