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.

DOME · eHealth · Medical Records Online · National patient survey · Popular science

Our eHealth studies are covered in the news again!

Health Informatics Journal

As I wrote in this earlier blog post, Åsa Cajander and I recently got a new eHealth study published on the effect of patient accessible electronic health records on the work environment of oncology care professionals (see blog image). You can find the open access article here. This press release was published around the same time and the intention was of course to spread our results to the general public. Our hope was that journalists from e.g. popular science journals would find the content of the press release interesting and publish their own versions.

Although this study does not seem to have generated the same interest as in this and this case, there is at least one popular science article published about our new study. That article was published in the journal Vårdfokus, which is a monthly journal for the members of The Swedish Association of Health Professionals (they also publish articles on a daily bases online, reaching a larger audience). The main focus of this popular science article is that there is indeed some more work and changed routines as a consequence of patients being able to access their medical records online, even though the effects were not as large as originally feared.

The article in Vårdfokus, which you can find here (in Swedish), is definitely inspired by our press release, but has a somewhat different focus. The journalist also contacted Åsa Cajander before writing the article, to discuss the study! The article ends with the following quote from Åsa:

These results nevertheless show that there were not as large effects on the work of the healthcare professionals as compared to the enormous concerns that existed when Journalen was introduced. But certainly both physicians and nurses have had to adapt, especially when it comes to how and what they document.

In the article in Vårdfokus there is also a link to another article which they have written about two of our earlier eHealth studies. Aside from combining one study on the patients’ perspective (the national patient survey) and one study on the professionals’ perspective (on effects of patient accessible electronic health records on perceived risks of threats and violence), they also include quotes from an interview with Åsa!

DISA · DOME · eHealth · Medical Records Online

New article published about the effects of patient accessible electronic health records on the work environment of oncology healthcare professionals!

Health Informatics Journal

Yesterday, the first journal article based on the large observation/interview/survey study about the effects of patient accessible electronic health records (PAEHRs) on oncology healthcare professionals was finally published in Health Informatics Journal! The article, “Oncology health-care professionals’ perceived effects of patient accessible electronic health records 6 years after launch: A survey study at a major university hospital in Sweden”, focuses on a survey covering  questions about effects of PAEHR on contacts with patients, documentation practices and care quality as well as supposed effects for patients. The survey was handed out to physicians and nurses by the heads of all departments at Uppsala University Hospital that were associated with blood and tumor diseases. This, in part, explains the unusually high response rate of around 72%. I led the data collection and analysis of this study and wrote the article together with Åsa Cajander at my former department at Uppsala University.

In the article we present several results, related to the areas mentioned above, from one of the first large follow-up studies in Sweden about clinician-perceived effects of PAEHR several years after launch of the system. Some of the key results are:

  • Oncology care professionals believe that it is generally a good idea to give patients access to their medical records through the PAEHR
  • There is a small effect regarding increased patient contacts, like e.g. more phone calls and longer visits
  • The strongest identified effect (although, still fairly small) concerns documentation practices. Especially, the respondents experienced that they are more restrictive in their notes now. This effect mostly concerns other conditions than cancer, like obesity and mental illness
  • The majority of the respondents do not see that the care has become safer as an effect of patients accessing the PAEHR
  • There were very few significant differences between the answers from physicians and nurses

The article is published open access here, where you can find more results and details about the study. As has been the case for our earlier eHealth studies published lately, a press release has also been published by Uppsala University about this new study. You can find the press release (in Swedish) here. Let’s see how the new travels this time around!

Here is the article’s abstract:

Patient accessible electronic health records have been launched in many countries, and generally, health-care professionals have had strong initial concerns related to the areas patient contact, documentation practices and quality of care. Especially, oncology care was discussed in media when launching patient accessible electronic health records in Sweden. However, few studies have investigated clinician-perceived effects several years after the launch. A survey covering these areas, as well as supposed effects for patients, was distributed to oncology health-care professionals 6 years after the launch of patient accessible electronic health records and answered by N = 176. Results show that patient accessible electronic health records have had small effects within the covered areas, and that the area most affected was documentation practices. Very few significant differences could be found between physicians and nurses. A comparison with results from interviews and surveys conducted shortly after the launch of patient accessible electronic health records clearly indicates that the experienced negative effects are not as big as originally feared.

In parallel with the work on the recently published survey study, a larger research group, also consisting of researchers from the DOME consortium, continues working with interviews with the oncology care professionals at Uppsala University Hospital. Thus, we will also provide you with more qualitative results on this topic.

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

Two papers submitted to Medical Informatics Europe 2020!


During August and September I have been working on two papers for the annual conference Medical Informatics Europe, together with colleagues from Uppsala University and University of Skövde, respectively. Next year’s version of the conference will be held in Geneva, Switzerland, April 28 – May 1. I will mention the papers briefly in this blog post, since they are not subject to a blind review. I will write more about them in later posts when they have (hopefully) been accepted. I’m the main author of both papers.

Both papers are based on data that were gathered while I was working as a postdoctoral researcher at Uppsala University. One of the papers, written together with Åsa Cajander from Uppsala University, is based on interview results from the large interview/survey/observation study on patient accessible electronic health records (PAEHRs) presented in this blog post. In this paper we focus on the effect of PAEHR on nurses’ work.

The other paper, written together with Hanife Rexhepi from University of Skövde, is based on results from the national patient survey which I introduced in this blog post. The focus in this case is on the effect of PAEHR on communication with medical professionals and on involvement in the care process.

This is the second time I contribute with papers to a MIE conference – the first time was in 2018 when MIE was held in parallel with Vitalis. That time around I was co-author of two papers and responsible for a workshop. I wrote about the presentation of one of the papers, also focusing on the effect of PAEHR on nurses’ work, in this blog post. In this blog post I write about the presentation of the other paper, focusing on differences between county councils/regions in Sweden when it comes to access to information in the PAEHR. You can read about our workshop, on the use of patient data for diagnoses and treatment of cancer, in this blog post.

I really enjoyed attending the MIE conference last time, and I’m positive it will be a nice experience this time around as well. The deadline for full paper (5 pages) submissions was recently postponed until October 15, so there is still time to submit research contributions to the conference!


DOME · eHealth · Grant application · Medical Records Online · National patient survey · Popular science · Uppsala Health Summit

Overview of my research within eHealth


Since I am still very much on a planning stage regarding the research I will perform during my recently started assistant professorship at Örebro University, I will take the opportunity to write a few posts about the research I have performed and what is currently going on. I will start by discussing research within the eHealth domain.

What have I done related to eHealth?

Those who have followed this blog during the latest years already know about my research on patient accessible electronic health records (PAEHRs), which I conducted during my time as a postdoc at Uppsala University. You can read a short summary about my two major studies (a national patient survey and an interview/survey study with clinicians at Uppsala University Hospital), submitted grant applications and conference activities in this blog post.

In total, my research on eHealth has, up until today, resulted in the following two journal publications (links lead to the open access articles):

and the following seven conference proceedings (most of the links lead to open access publications):

The work within the eHealth domain has also resulted in the following popular science publications (and some other news coverage, which you can read about here and here):

To sum up, my research within this domain, up until today, has focused on PAEHRs and their effects for patients and healthcare professionals.

My ongoing research within the eHealth domain

I am currently involved in quite a few ongoing research activities related to eHealth, especially when it comes to pushing journal manuscripts through the peer-review process.

When it comes to data gathering and analysis, there is still a lot of work to do in the large interview/survey study at the Oncology department at Uppsala University Hospital that I mentioned before. For many different reasons we were not able to conduct all the 20 interviews with nurses that we had planned. Around 10 more interviews need to be performed. When it comes to the physicians, the data gathering is complete and we are working with the analysis. My hope is that we will be able to submit a first overview article about those interviews in late autumn 2019 or early spring 2020. Specific theme articles are also planned, but they require a more in-depth analysis. The articles based on this study will be very important for research on patient accessible electronic health records in Sweden, since this is the first large follow-up study in Sweden regarding long-term effects of PAEHR on the work environment of healthcare professionals.

When it comes to the national patient survey all data gathering is completed, but there are still some themes from the survey that we want to look into in more depth. These include information literacy, computer security and comparisons between different disease groups.

I’m currently working on some journal publications together with colleagues in the DOME consortium. One of these articles reports on findings from the survey on the effect of PAEHR on the work environment of healthcare professionals, distributed to physicians and nurses at the Oncology department at Uppsala University Hospital. I expect this article to be published quite soon (a minor revision is about to be submitted back to the journal), so there will be a publication and, of course, a press release coming up pretty soon. One journal manuscript focusing on sharing health records is currently in the first review round and two journal manuscripts based on the patient survey, focusing on cancer and psychiatry patients, respectively, can be submitted to journals quite soon.

Upcoming research on eHealth

As I said in the beginning of this post, I’m very much on the planning stage when it comes to future research. There are a few activities, however, that I’m sure I will be working with during the upcoming months (these will get their own blog posts later on):

  • Currently, it seems that I will submit at least two conference articles to next year’s version of Medical Informatics Europe. The deadline for submissions is September 1st, but on the other hand there is a scope limit on five pages. One article will be about results from the interview/survey study with healthcare professionals and the other will focus on results from the patient survey.
  • Quite soon, I will take the lead on a more theoretical journal article, focusing on the role of the PAEHR as a communication mediator in healthcare.
  • The above-mentioned article is directly related to a research grant application which is currently being reviewed by the Swedish Research Council (VR) – if the application is accepted I will finally get the opportunity to lead my very own research project!
  • There is also another grant application, related to psychiatry records online, which is currently being reviewed by the Swedish Research Council for Health, Working Life and Welfare. 2020 can be a very interesting year, indeed!
eHealth · Medical Records Online

Now I can see new test results in my online electronic health record!


A few months ago, I wrote about a workshop that focused on critical incidents and eHealth, in which I participated as a patient. My contribution, which you can find here, was based on a real-life scenario, which you can find at the end of this post. The critical incident, highlighted by the scenario, relates to a situation in which lack of access to my electronic health records could have had severe consequences.

The scenario was written at a time when the county council I belong to, Stockholm, had not yet introduced Journalen (which is the system currently used in Sweden for accessing medical health records online). Quite soon after the workshop, some hospitals in Stockholm (one of which I go to) started using the system.

Last Friday I went to the lab for the regular blood tests I need to take due to the immune suppressive medication I use (see scenario below). Two hours later I logged into Journalen and all test results were already there for me to see! Apart from specific results, reference intervals were also given as a way to indicate what could be considered normal values. There was also a graph function that showed how specific values changed over time. The image above shows one example (a liver value – the medication can in rare cases cause liver illness).

This is exactly what I have been looking for – if I had this opportunity back in 2009, I would not have been totally dependent on my doctor calling me during the regular call hours and there would never have been a critical incident in the first place! I may not understand what all tests are for and what the specific values mean, but I can clearly see if the values are within the normal interval and I can also see historic changes. Having online access to this information is very important to me, and of course other patients taking immune suppressive medication, not only because it gives me a better understanding of my health, but also because it can directly influence my chances of staying healthy – as I wrote in the workshop contribution, I could be in danger despite the fact that I feel fine.

Last, I just want to point out that this is a personal commentary to the workshop contribution discussed above (and in this blog post) that I make as a patient. The function I was looking for has now been made available to me and many others in the Stockholm county council (many other county councils introduced this possibility before Stockholm). As should be evident to everyone following this blog, I am not only a patient with a chronic rheumatic disease but also a researcher specifically focusing on electronic health records. It is very interesting to have these two roles, enabling me two look at the research area from different perspectives! And, in case you wonder, I will not let my personal experiences affect the way I gather data and report on results – I will rather, as a researcher, let the data tell the story and then comment on it, e.g. in this blog, as a patient when appropriate.

The scenario:

“Back in 2006 I was diagnosed with a rheumatic disease and a few years later in 2009 I got a treatment that has worked fairly well ever since. The disease I have is auto-immune which means that the immune system attacks healthy tissue causing inflammations. The medication I take lowers the immune system to counteract this. A side effect of this particular medication is that it is easier to get sick and that it takes longer time than usual to get well after an infection.


In the beginning of the last week of June 2009, I went to one of my quarterly checkups mostly to make sure that everything was fine, and four days later I should attend a conference in Portugal. I felt fine, so I saw really no reason to call the hospital and ask for the results from the blood tests (which I always do if I’m not at good health when the tests are performed). One day before the journey to Portugal my doctor called me during the usual calling hours and let me know that more tests were needed since the immune system was at an unusually low level – obviously due to the medication I take. I then asked if it was advisable that I travelled to Portugal for the conference. The response I got both scared me and caught me by surprise – I should definitely not travel anywhere until new tests had been evaluated.”

DISA · DOME · eHealth · Medical Records Online

The team behind a new large study on electronic health records in Sweden


In my last blog post I wrote about the application for ethical review, concerning a new large interview/survey/observation study with doctors and nurses at Akademiska Sjukhuset in Uppsala. The study, which will focus on how patient access to their medical records online has affected the work environment for physicians and nurses, will probably start during March. Since we are currently waiting for the results from the ethical review, this seems like a good time to introduce the team members behind the study.

The study is part of the DOME consortium, which collects researchers with a common interest in online electronic health records and their effects on patients and medical staff. The researchers come from different universities in Sweden. DISA (The effects of digitalization on the work environment for nurses) is a newly started project within the DOME consortium and the study I’m leading is the first study carried out within that project.

As many as 8 researchers and 2 medical doctors are behind this study;

Uppsala University:

  • Jonas Moll (In case you don’t realize whose blog you are reading – this is me! 🙂. I’m postdoc in Human-Computer Interaction at the IT-department and I lead this study)  [Researchgate]
  • Åsa Cajander (An associate professor in Human-Computer Interaction at the IT-department, who is the main responsible for the study and also the leader of DISA and the DOME-consortium)  [Blog] [Twitter] [Researchgate]
  • Isto Huvila (A professor in Information Studies at the ALM department)  [Blog] [Twitter] [Researchgate]


Uppsala University Hospital (Akademiska Sjukhuset):

  • Gustaf Hedström (A medical doctor with a Ph.D. degree in Oncology, at the department of Immunology, Genetics and Pathology)  [Researchgate]
  • Ingrid Glimelius (A medical doctor with a Ph.D. degree in Oncology, at the department of Immunology, Genetics and Pathology)  [Researchgate]


Karolinska Institutet:

  • Maria Hägglund (A researcher in Health Informatics with a Ph.D. degree in Medical Informatics, at the department of Learning, Informatics, Management and Ethics)  [Blog] [Twitter] [Researchgate]


Royal Institute of Technology:

  • Christiane Grünloh (A Ph.D. student in Human-Computer Interaction at the School of Computer Science and Communication)  [Twitter] [Researchgate]


University of Skövde:

  • Rose-Mharie Åhlfeldt (An associate professor in Computer Science at the IT-institution)  [Twitter] [Researchgate]
  • Hanife Rexhepi (A Ph.D. student in Information Technology at the IT-department)  [Twitter][Researchgate]


Örebro University:

  • Gunilla Myreteg (An associate professor in Business Economics at the School of Business)  [Researchgate]


The group introduced briefly above is highly multi-disciplinary, which I am sure will prove to be valuable for the study. Stay tuned for more!  🙂

DOME · eHealth · Medical Records Online

Study documents sent in for ethics review!



I have written in several blog posts that I’m leading a large study focusing on how patient access to medical records online has affected the work environment for nurses and physicians. The study was planned thoroughly during autumn 2016 and after a workshop, several meetings and a whole lot of writing we ended up with a plan, which I think will provide us with deep insights into the effects that the e-health system Journalen (used in Sweden to access your medical records) has had. Interviews, observations and a short survey will be used in the upcoming study.


During December and January I finalized the documents needed for the ethical review, with help from ass. prof. Rose-Mharie Åhlfeldt who is also part of the research team (I will present everyone next time I write about the study). Last week, I sent the documents to the review committee. That was easier said than done! I had to send one single-side printed version of the entire application and on top of that 17 double-side printed copies of everything! The paper pile in the picture above was the end result. I hope they will find some new routines for submitting applications, since transmitting 4 kg of papers by a courier service is not efficient.


Ok, enough complaining. I’m very happy that the documents were submitted and that we will probably be able to start the study in March (even if the committee want us to change some things). This will be, by far, the largest study I have been a part of and I’m really looking forward to it! Journalen has been used for a little more than four years in the Uppsala County Council, so it is important to do this follow-up study to see what effects the system has actually had. Stay tuned for more!  🙂



DOME · eHealth · Medical Records Online

Video explaining eHealth research within the DOME consortium


I have not been blogging for a while now, mostly due to a bad cold and time pressure with finalizing an application for ethical review. I will get back to the application in a later blog post this week and I will of course also continue with my blog series on haptic interaction.

I have mentioned several times that I do research within the DOME-consortium in Sweden and since I still have limited time I will “cheat” somewhat and instead let my colleagues Åsa Cajander (coordinator of the consortium) and Isabella Scandurra explain the idea behind the consortium and some earlier eHealth related research: DOME research video (the first half of the video concerns DOME)!

(The video, which I can really recommend, is from their presentation at the EHiN (EHealth in Norway) conference in Oslo last November).

DOME · eHealth · Medical Records Online

Interviewed on a podcast!

I hinted in earlier blog posts that I had been interviewed during December 2016 and today I got confirmation about that the podcast has been published! Åsa Cajander and I were invited to speak at an internal seminar at Södertörns högskola 14/12 last year. The focus of our presentation was on patient access to medical records online, and especially on the differences between the physicians’ and the patients’ views of the system.

We used the role play format yet again (as we did in this workshop) – Åsa played the physician who was concerned about the effects that online medical records could have and I played the patient who was positive towards most aspects of the online medical records. Presenting with Åsa at the seminar was overall a nice experience and the people in the audience (mostly associate professors in media technology) were very active and asked many interesting questions and came with ideas on what to look for in our upcoming studies.

After the seminar Åsa and I were interviewed on a podcast, which you can find here (in Swedish)! It was quite an experience for me, since I have never been interviewed before. The interview was based on the topics and results brought up to discussion during the seminar. If you listen to the short podcast you will, among other things, learn more about what Åsa and I work with at Uppsala University, and hear about some preliminary results from the large national patient survey study I’m currently leading.