In this recent blog post I wrote about a conference contribution to ISHIMR (International Symposium for Health Information Management Research) which was selected for inclusion in a medical journal special issue. My colleague Hanife Rexhepi and I presented the article “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” and everything went fine. But just as a precaution the organizers wanted us (and all other contributors to the conference) to record the presentation and submit the recording a few days before the conference. If something would go wrong with Zoom they could always run the video. They never had to use our recording at the conference, but I have now decided together with Hanife that I should share the video in this blog post instead.
Hanife and I recorded our presentation through Zoom and you can see the resulting 19 minutes presentation here:
When it comes to the article that was selected for the journal special issue, we actually got a “minor revision” response after the first round of reviews! Hopefully I will be able to share the open access publication before summer.
Around two months ago a new journal paper was published where I was one of the co-authors. The paper belongs to the quite large set of papers that are based on the national patient survey that I have been referring to multiple times in this blog. The title of this new paper is “Technological and informational frames: explaining age-related variation in the use of patient accessible electronic health records as technology and information” and it was published in the journal Information Technology & People.
In this paper we are comparing responses from the different age-groups Young (< 51 years), Older adults (51-66 years) and Elderly (>66 years), to investigate how the preference and use of patient accessible electronic health records (PAEHRs) and PAEHR information differ between them. We are also bringing in the theory of technological frames for the analysis. My DOME consortium colleague Isto Huvila is the main author and the other co-authors are Åsa Cajander, Heidi Enwald, Kristina Eriksson-Backa and Hanife Rexhepi.
The paper was published Open Access and you can find it here. You can find the abstract below. To recap, these are the national survey articles published prior to this one (follow the links to reach the Open Access articles):
Rexhepi, H., Moll, J., Huvila, I., and Åhlfeldt, RM. (2020). 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. Proceedings of the Eighteenth International Symposium for Health Information Management Research (Kalmar, Sweden, September 17-18). pp. 169-178.
And, last, here is the abstract from the most recently published article:
Purpose – Data from a national patient survey (N 5 1,155) of the Swedish PAEHR “Journalen” users were analysed, and an extended version of the theory of technological frames was developed to explain the variation in the technological and informational framing of information technologies found in the data.
Design/methodology/approach – Patient Accessible Electronic Health Records (PAEHRs) are implemented globally to address challenges with an ageing population. However, firstly, little is known about age-related variation in PAEHR use, and secondly, user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other. The purpose of this study is to investigate these two under-studied aspects of PAEHRs and propose a framework based on the theory of technological frames to support studying the second aspect, i.e. the interplay of information and technology–related perceptions.
Findings – The results suggest that younger respondents were more likely to be interested in PAEHR contents for general interest. However, they did not value online access to the information as high as older ones. Older respondents were instead inclined to use medical records information to understand their health condition, prepare for visits, become involved in their own healthcare and think that technology has a much potential. Moreover, the oldest respondents were more likely to consider the information in PAEHRs useful and aimed for them but to experience the technology as inherently difficult to use.
Research limitations/implications – The sample excludes non-users and is not a representative sample of the population of Sweden. However, although the data contain an unknown bias, there are no specific reasons to believe that it would differently affect the survey’s age groups.
Practical implications – Age should be taken into account as a key factor that influences perceptions of the usefulness of PAEHRs. It is also crucial to consider separately patients’ views of PAEHRs as a technology and of the information contained in the EHR when developing and evaluating existing and future systems and information provision for patients.
Social implications – This study contributes to bridging the gap between information behaviour and systems design research by showing how the theory of technological frames complemented with parallel informational frames to provide a potentially powerful framework for elucidating distinct conceptualisations of (information) technologies and the information they mediate. The empirical findings show how information and information technology needs relating to PAEHRs vary according to age. In contrast to the assumptions inmuch of the earlier work, they need to be addressed separately.
Originality/value – Few earlier studies focus on (1) age-related variation in PAEHR use and (2) user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other.
Quite a lot of things have been going on in parallel lately, especially related to research, and because of this I actually forgot to update this blog during the last few months. I will now restart the blog again by presenting some good news related to publications.
In September last year Hanife Rexhepi and I presented our paper “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” at the 18th International Symposium for Health Information Management Research (ISHIMR 2020). We wrote the paper together with our DOME consortium colleagues Isto Huvila and Rose-Mharie Åhlfeldt (see blog image above). Around two months ago the first author, Hanife, received an email from the ISHIMR 2020 programme committee revealing that our paper had actually been among the top rated papers in the peer-review process and as a result of this it had been selected for inclusion in a journal special issue! This is actually the first time that a conference contribution I have been working with has been rewarded like this. It is, however, not the first time for Hanife. She has not only managed to get conference contributions selected for special issues during earlier versions of ISHIMR (as first author), but she also got two papers selected for a special issue this year!
Since we are now dealing with a journal publication the demands are of course higher and there will be at least one new round of peer-review that most probably will result in demands for revisions. We are currently waiting to hear from the journal editor after the first round of peer-review. After final acceptance I will tell you more about the journal, the special issue and of course the paper itself.
As I wrote in my previous blog post about my recently published article ”Online electronic healthcare records: Comparing the views of cancer patients and others”, a press release was about to be published by Örebro University. The press release (in Swedish) about the study was published yesterday morning and you can find it here. I have written before about the importance of publishing press releases and engage in other popular science activities – these activities can not only increase the visibility and accessibility of your research but also increase the possibility of the research being used in practice.
This particular press release was a little bit different than the earlier ones I have worked with. When I worked at Uppsala University as a postdoc researcher I (often in collaboration with research colleagues) wrote the press releases myself, which were then published by the university. But this time around I wrote a short draft and was then invited to a short interview with a representative from the press department. This resulted in the press release being based on quotes from the interview.
This particular press release had a very interesting effect. Just a few hours after it had been published on the university news page I got an email from the editor in chief of the national journal Onkologi i Sverige [Oncology in Sweden], who wanted me to write a short article in Swedish about the same study! We decided that I will do that and since it was ok with two authors I will collaborate with my colleague Hanife Rexhepi from University of Skövde who led the study together with me. This is of course an excellent opportunity to spread the results to a much larger audience so it is definitely worth the effort. The journal also published a version of the press release here. I will of course get back to this in later blog posts as the work progresses.
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.
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.
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.
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.
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)
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.
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:
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.
Iterative prototype development, focusing on haptic and audio technology, where we follow a user-centered design approach.
Evaluations in schools, where groups of pupils will solve some prepared school assignments with the developed application.
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 🙂