conference · DOME · eHealth · Medical Records Online · NORDeHEALTH

New conference paper on psychiatric records online in four countries

During late autumn 2021 and spring 2022 I collaborated with colleagues from the NORDeHEALTH project in writing two conference papers to the Medical Informatics Europe 2022 conference. Both papers were based on a socio-technical analysis of patient accessible electronic health records (PAEHRs) that was performed within the scope of the work package “National socio-technical contexts and policies” that Isabella Scandurra and I are co-leading. Both papers were accepted and presented at the conference in May and this blog post concerns the one focusing on psychiatric records online. The title of the paper is “Patients’ Access to Their Psychiatric Records – A Comparison of Four Countries”.

In the paper we are doing a cross-country comparison between Sweden, Finland, Norway and Estonia (the countries that are represented in the NORDeHEALTH project), focusing on differences and similarities in what clinical information is shared in the PAEHR regarding psychiatric conditions. We found many similarities, but also some important differences regarding for example the type of notes shared in the different countries. Annika Bärkås, a doctoral student from Uppsala University focusing on patients’ access to mental health records, was the main author and the other co-authors were Maria Hägglund, Åsa Cajander, Hanife Rexhepi, Iiris Hörhammer, Charlotte Blease and Isabella Scandurra.

The paper was published Open Access (this is the case for all papers from this particular conference) and can be found here.

Here is the abstract:

Several Nordic and Baltic countries are forerunners in the digitalization of patient eHealth services and have since long implemented psychiatric records as parts of the eHealth services. There are country-specific differences in what clinical information is offered to patients concerning their online patient accessible psychiatric records. This study explores national differences in Sweden, Norway, Finland, and Estonia in patient access to their psychiatric records. Data was collected through a socio-technical data collection template developed during a workshop series and then analyzed in a cross-country comparison focusing on items related to psychiatry records online. The results show that psychiatric records online are offered to patients in all four countries, and provide the same functionality and similar psychiatry information. Overall, the conclusion is that experiences of various functionalities should be scrutinized to promote transparency of psychiatric records as part of the national eHealth services to increase equality of care and patient empowerment.

DOME · eHealth · Medical Records Online · NORDeHEALTH

International survey on experiences with patient accessible electronic health records

Today (January 24, 2022), an international survey was launched in Sweden, Finland, Norway and Estonia. Some of you may already have seen this press release about it from Örebro University that was published last week. The survey, that focuses on attitudes towards and experiences with patient accessible electronic health records (PAEHRs), is a part of the NordForsk-funded project NORDeHEALTH which I introduced in an earlier post. Citizens in the participating countries can access the survey by logging in to the respective national patient portal (the blog image above shows how it looked when I just logged in to the Swedish system, “Journalen”). The results will not only tell us about the citizens’ experiences with the PAEHR system in each respective country, but also enable us to do comparisons between the countries. During the last part of the NORDeHEALTH project we will, through a user-centered design process, prototype new eHealth services for patients – the results from the international survey will surely provide very valuable input to that work. So, please participate in the survey if you have the possibility.

If you want to know more about NORDeHEALTH, you can watch the short video below where some of my colleagues from Sweden, Finland, Norway and Estonia describe what the project is about and why it’s important.

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.

Distance work · DOME · eHealth · Grant application · Haptics · NORDeHEALTH

Just reached half-time of my assistant professorship at Örebro University!

In the beginning of August 2019 I started off my work as an assistant professor in Informatics at Örebro University. The assistant professorship is a four year position, and towards the end you will, in most cases, be promoted to a senior lecturer or associate professor after an application procedure. Since I have now reached half-time, I think it’s reasonable to summarize what I have done this far and discuss what lies ahead.

Overall, I’m very happy with how the first two years played out when it comes to both research (~80%) and teaching (~20%), even though the pandemic posed some difficult challenges in both areas. I have gotten the opportunity to participate in some very interesting research collaborations. The funded Vinnova project I drafted the application for during the first weeks at the university ended just before summer 2021 and the collaboration that was built with the involved stakeholders was really fruitful. Representatives from both The Swedish Association of the Visually Impaired and The National Agency for Special Needs Education and Schools (SPSM) want to continue the collaborations and we are already looking for new funding opportunities in the area of accessible digital collaborative learning environments. The national and international collaborations in the NordForsk project NORDeHEALTH, which started up formally in January 2021, have also been fruitful and I look forward to another two years of research on personal eHealth services in the Nordic countries. Aside from working in externally funded projects, I also started up some internal collaborations, mostly related to pedagogical research. I will write more about the first two years of research, and the publications published, in my second and third posts about the first half of the assistant professorship.

The teaching has been more of a challenge than I expected when I stared working as an assistant professor two years ago. I know the courses, but being thrown into digital teaching mode made the teaching more difficult than ever before, especially since I have been course responsible for the courses I have been involved in (Interaction design and System development theory). Despite this, the courses worked really well and the students seemed to be happy with them. I will write more about these courses, and the challenges associated with digital teaching and examination, in my fourth and last blog post about the first two years of my assistant professorship.

I really hope, and also believe, that the second half will be just as rewarding as the first one. Hopefully, I will be able to start even more internal research collaborations, especially now when I have made sure that we have two brand new haptic devices at the department – this should open up several new research opportunities within, for example, the areas of digital learning environments and multimodal data exploration and analysis!

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.