DOME · eHealth · Medical Records Online · NORDeHEALTH · NordForsk

Taking part in a new eHealth research project funded by NordForsk

January 1st this year a new research project, NORDeHEALTH, started off. The work on the application for this project started already during the autumn 2019 and the application was submitted to NordForsk in January 2020. In May 2020 we received an email from a NordForsk representative confirming that NORDeHEALTH was among the funded projects! There are quite a lot of Nordic partners involved in this eHealth project. All universities that are currently connected to the DOME consortium (Uppsala University, Örebro University, University of Skövde and Karlstad University) are in the project. There are also partners from Finland (Aalto University), Norway (Norwegian Center for E-health Research), Estonia (Tallinn University of Technology) and USA (Open Notes). You can read about the different project partners, and the researchers representing them, here. Maria Hägglund from Uppsala University is the project leader and she was of course also the main applicant.

The overall aims of the project are the following:

  1. study the current implementation and adoption of Personal eHealth Services (PeHS) in the Nordic countries to create new knowledge and in-depth understanding of challenges and opportunities,
  2. develop evidence-based evaluation frameworks and guidelines to help researchers and practitioners within and beyond the Nordic countries evaluating PeHS and their acceptability, and support successful implementation and adoption of PeHS, and
  3. explore factors around co-design of PeHS through innovation projects focusing on patient-generated data and tools for patients co-creation of the medical record, as well as providing best practice guidelines.

I was one of the co-applicants and I’m also coordinating the work package on “National socio-technical contexts and policies” together with my Örebro University colleague Isabella Scandurra. I’m also the one who is responsible for the work in the Örebro University team on an overall level. Yesterday, I published a blog post on the official NORDeHEALTH webpage about the work that has been performed, and will be performed, related to the work package mentioned above. You can read the post here.

If you find the project interesting, I really recommend you to visit the official web page occasionally and to follow the project blog. The publication list is updated as soon as anything new comes in and the blog is updated quite regularly with posts about ongoing work, publications and events where project partners are involved.

I will of course get back to you later on about NORDeHEALTH on my own blog as well. So stay tuned 🙂

communication · conference · DOME · eHealth · Medical Records Online

Recording of invited talk at a recent nursing informatics conference

In my last blog post I wrote about an invited talk at the yearly conference on nursing informatics organized by the Section for nursing informatics (a section belonging to the Swedish Nurse’s Association). I tried to summarize the main points of the talk in my last post, but since it was pre-recorded and I now know that it’s ok to share the recording on this blog, I will link to the 15 minutes presentation in this post. The recording function in PowerPoint was used, so you need to start the slide show before anything can be heard.

communication · conference · DOME · eHealth · Medical Records Online

Invited talk at a one-day conference on nursing informatics

More than a year ago I was invited to hold a short presentation at a yearly conference on nursing informatics organized by Sektionen för omvårdnadsinformatik [Section for nursing informatics]. This national conference was postponed due to Covid-19, but earlier this week on Wednesday April 14 it was finally held in digital form. Unfortunately, I missed several parts of it due to other engagements, and I had to record my presentation prior to the conference. The (translated) title of my talk was “improved patient dialogue through the patient accessible electronic health record (PAEHR)?” and focused on results gained from several studies with both patients and healthcare professionals within the national DOME consortium.

Several results from recent studies with patients show that they are seldom informed about the possibilities of the PAEHR by healthcare professional. On the same theme, healthcare professionals rarely encourage their patients to use the PAEHR. Even though a recently published study showed that cancer patients are informed about and encouraged to use the PAEHR to a higher extant than other patients groups, the results are still not that positive. Studies with healthcare professionals also show that the view of the PAEHR as only a system for patients is very common. I tried to problematize these and similar results in my talk and I especially discussed their implications for the use of the PAEHR in the communication between patients and healthcare professionals. It is quite clear that the PAEHR is used in the communication between patients and healthcare professionals to a very low extent today. This is problematic, since one of the main reasons for implementing the Swedish PAEHR, Journalen, was to increase patients’ involvement in their own care through e.g. shared decision making. To me, it seems like we have quite a large unused potential here.

I ended my talk by discussing how the PAEHR could be used in the communication with patients in the future. One of my examples was that contact nurses in cancer care could ask their patients to review what has been written in the PAEHR since their last healthcare visit as a kind of preparation for the next upcoming visit. This could potentially help the patient to come up with questions and it could probably also make it easier to spot e.g. misunderstandings. If healthcare professionals actively encourage patients to use the PAEHR more patients would probably discover the eHealth service and the possibilities that it can offer. Another example, related to test results, that I brought up was that there could be a potential for self-care, especially for patients that regularly visit the lab. Provided that healthcare professionals do regular follow-ups, some patients may be able to adjust their medication in response to test results found in the PAEHR. This example was actually brought up by a physician in one of our latest (yet unpublished) interview studies with healthcare professionals!

I’m not sure yet if it’s ok to share the recorded presentation on this blog. If it’s ok for the conference organizers I will of course share it in a later post!

conference · DOME · eHealth · Medical Records Online

A recorded presentation about receiving bad news in an era of digital health!

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.

DOME · eHealth · Medical Records Online · National patient survey

New publication about age-related variations in the use of patient accessible electronic health records

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):

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.

conference · DOME · eHealth · Medical Records Online

Conference paper selected for a special issue in medical journal!

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.

DOME · eHealth · Medical Records Online · National patient survey

Another rewarding press release

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.

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.