DOME · eHealth · Medical Records Online · National patient survey

New article published about patients’ preferred ways of receiving bad health news in an era of digital health

As I wrote in this blog post, a conference paper that was submitted to and presented at the The International Symposium for Health Information Management Research (ISHIMR 2020) was selected for publication in Health Informatics Journal. The journal version was recently published with the open access option and is available here! The title of the publication 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”. My colleague Hanife Rexhepi from University of Skövde is the main author and the co-authors are, aside from me, Isto Huvila from Uppsala University and Rose-Mharie Åhlfeldt from University of Skövde. All of us are members of the DOME consortium and the NORDeHEALTH project.

The study presented in the article focuses on results from two questions in a large Swedish patient survey on patients’ attitudes towards and experiences with the patient accessible electronic health record service Journalen. The questions in focus were: “How do you receive bad news about your health from your health care provider?” and “How would you want to receive bad news about your health?” The response options were (short versions): “Phone”, “During visit”, “Physical letter”, “Journalen”, “Other”. The results were quite interesting, especially when it comes to the proportion of patients who received bad news by reading about them in Journalen (~2.0%) compared with the proportion of patients who want to receive bad news by reading about them in Journalen (~17.7%). There is a big difference here, even though the majority still wants to receive bad news via phone or during a visit. It is important to note here that patients who get notified about bad health news through Journalen have not yet discussed the results with e.g. a physician.

Even though healthcare professionals generally have a more positive attitude towards Journalen nowadays, physicians, especially within oncology, worry about patients finding out about bad health news on their own through this e-service. This is interesting to relate to the findings from the newly published study. We are definitely living in an era of digital health, and maybe this has changed, and will continue to change, how we want to receive bad news about our health.

Earlier today, a Swedish news article as well as a press release about the study was published by Örebro University. You can find the news article here.

I also want to mention the following article that was published in the same special issue in Health Informatics Journal (Hanife is first author even on this one, and Isto and Rose-Mharie co-authors!):

Here is the abstract of our newly published study:

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’s 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, for example 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.

DOME · eHealth · Grant application · Medical Records Online · NORDeHEALTH

Looking back at the first two years of research at Örebro University, part 1: eHealth services for patients

In my last blog post I began my summary of the first half of my assistant professorship at Örebro University. In this blog post I will write more about the research part. During these last two years I have conducted research within these three different areas:

  • eHealth services for patients
  • accessible collaborative digital learning environments
  • teaching in higher education

My initial idea was to write one single blog post where I would summarize my research activities within all these areas, but I soon realized that the blog post would be too long. Instead, this post will focus on the first area, and the next two posts will focus on the second and third area, respectively.

eHealth services for patients

Just like I was before I started working at Örebro University, I have been a regular member of the DOME (Development of Online Medical records and E-health services) research consortium. This consortium gathers researchers from several Swedish universities and I have really enjoyed the collaboration with other DOME-researchers ever since I joined 2016. At the time I started up my assistant professorship, DOME was not externally funded (members were involved in e.g. Forte projects, but the consortium was not funded as a whole). During the first months at Örebro University I was one of many DOME researchers who wrote an application to NordForsk, in collaboration with partners from Finland, Norway, Estonia and USA. This was of course a great opportunity to fund the consortium as well as strengthening the collaboration with researchers in other countries who also focus on the implementation and effects of eHealth services for patients. The result of this hard work was the NordForsk-funded project NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future)! You can read more about the partners and the focus of the project in this blog post and of course on the official project webpage. The three-year project has now been running for around 8 months. Our project leader, Maria Hägglund from Uppsala University, leads management meetings each month, where most researchers participate, and we also have shorter informal “coffee and chat” sessions twice a month.

I really enjoy being a part of the NORDeHEALTH project and we have a really nice mix of researchers from several different disciplines! The only real down side up to this point is related to the pandemic – we have been working together for several months and we have still not gotten the opportunity to actually meet in person. Hopefully, we will be able to meet for the first time in December.

My responsibilities in the project are to lead the team at Örebro University and to co-lead the work package “WP 2 – National socio-technical contexts and policies” together with Isabella Scandurra. In this blog post you can read about the first months of work in our work package. We are currently working with collecting data related to the Swedish patient portal 1177 and the Swedish patient accessible electronic health record system Journalen. It will be very interesting to compare the results from the different countries later on during the autumn! Quite soon, large surveys will also be distributed in the participating Nordic countries and interview studies with both patients and healthcare professionals will be carried out. I will get back on this later on. There is no doubt that this project will play an important role when it comes to for example the understanding of the implementation and effects of eHealth services for patients, as well as future development of these kinds of services (at least) in the Nordic countries.

Before NORDeHEALTH started, I mostly worked with data from the large national patient survey that I have been writing about many times on this blog, and I was also part of a smaller research collaboration with my colleague Gunnar Klein and Region Örebro regarding the region’s implementation of video visits in primary care. Hopefully, new funding will come in making it possible to study both the implementation and initial effects of engaging in video visits, in depth. I would definitely welcome such a research project. I mentioned the successful research application above, but of course some unsuccessful ones were handed in as well. Four applications (one to the Swedish Research Council, one to AFA Insurances and two to Forte) were declined. Three of them were focusing on different aspects of patient accessible electronic health records and shared decision making and the fourth, to AFA Insurances, focused on how digital technology could be, and should be, used when relatives communicate with dying relatives without being able to meet in person. I assume that we will be making new rounds with the applications during this autumn and next year.

When it comes to conferences I have participated in both Vitalis and The International Symposium for Health Information Management Research (ISHIMR), which were both held online. You can read about my online Vitalis experience here and you can actually find the video presentation that Hanife Rexhepi and I used for the ISHIMR conference here.

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!

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 · Popular science · Vitalis

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


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.


DOME · eHealth · Medical Records Online

Just submitted an abstract to a Frontiers research topic!


Today was the last day to submit abstracts to the Frontiers research topic “Personalized Digital Health and Patient-centric Services”, which I introduced in this blog post. Earlier today I submitted an abstract for a theoretically oriented article on the use of patient accessible electronic health records that I will write together with some of my colleagues in the DOME consortium. Since there will be a rigorous review process I will not give any more details about it here and now.

The fact is that I will drive the work with yet another article that will be submitted to the same research topic and I will also be a co-author on a third one. Unfortunately, there was not enough time to submit abstracts for these (abstract submission is not mandatory). All articles focus on different aspects of patient accessible electronic health records. Obviously, there will be a lot of writing this upcoming spring!

The important deadline to remember is March 31st, when manuscripts should be submitted to the research topic. I think this is a very good opportunity for those who conduct eHealth research that fits the topic – and you still have about four months to write a manuscript! See the blog post linked above for some more details and a link to the submission site.

conference · DOME · eHealth · Grant application · Medical Records Online · Vitalis

New DOME conference and a visit from University of Iowa!

Last Thursday evening I returned home to Stockholm after some very rewarding days at University of Skövde, where we had this fall’s DOME conference. Before travelling to Skövde Tuesday morning, I also spent a day at Uppsala University where I met Carolyn Turvey from the department of psychiatry at the University of Iowa. Carolyn has, like the researchers in DOME, a research focus on eHealth and patient portals. Thus, this has been a week with a heavy focus on eHealth research in different contexts. There is a lot to say about what was going on during these days so I will just bring up some general points here and then focus on different parts in later blog posts.

During the Monday, Carolyn came to the department of Information Technology at Uppsala University to meet me and another colleague (visiting researcher) from the same research group – Magdelena Stadin. When it comes to eHealth and patient portals, Carolyn’s focus is on the My HealtheVet portal for the Veteran Affairs in the United States. The original idea was that I should meet Carolyn only during the morning, but because of different unforeseen events we spent the entire day together discussing different projects and implementations of patient portals. It was very interesting to discuss Sweden’s version of the patient accessible electronic health record and compare it with My HealtheVet. The basic ideas behind these systems are similar – that patients should be able to access e.g. visit notes, test results and medication lists online – but the implementations are totally different! I will write more about this in a later blog post. During the last hour at Uppsala University Carolyn held an interesting guest presentation, about an evaluation of My HealtheVet, which some other members of my former department joined.

During the Tuesday and Wednesday, the DOME researchers gathered for this fall’s two-day conference. Rose-Mharie Åhlfeldt hosted the conference at the University of Skövde. Unfortunately, Carolyn and I were the only researchers who could actually travel to the university and be present during both days. Several others, however, joined us via Zoom. The first day started with lunch, after which Carolyn held a short presentation about her work with My HealtheVet. Her presentation was, once again, very appreciated and it is clear that we have many shared research interests! I will write more about these in other blog posts. During the rest of the afternoon Maria Hägglund led a discussion about a new research grant application to NordForsk which we will write during the fall, together with partners from other Nordic countries (Norway and Finland, among others). The focus will of course be on different aspects of patient portals. We came up with several interesting ideas for future research in the area so I think we will end up with a strong application! We ended the day by going to dinner at a very interesting restaurant where you order everything on your phone!

During Wednesday morning, after some additional discussions about the NordForsk application, I held a presentation where I showed some results from the large inteview/survey/observation study at Uppsala University Hospital. I will get back to that in a later blog post. You can also read about the survey study, on the effects of patient accessible electronic health records on the work of oncology professionals, in this blog post. During the rest of the time before lunch Isabella Scandurra led a discussion about next year’s DOME session at Vitalis. I think we ended up with a very interesting agenda, including some presentations, panels, some role play (of course!) and strategies for involving the audience. I will get back to this later on (you can read about an earlier DOME session at Vitalis here). This was the last point on this fall’s DOME conference agenda.

During the late Wednesday afternoon and most of the Thursday I met with another DOME colleague in Skövde – Hanife Rexhepi. Since she couldn’t attend the conference we decided to meet afterwards instead. We have a lot of things going on related to planned grant applications and ongoing work with several journal manuscripts. We had interesting discussions which, among other things, resulted in a version of a journal manuscript which I could submit to a journal the day after! During most of the time we took some longer walks in Skövde – a really nice town! During one of those walks I took the above blog image.