DOME · eHealth · Medical Records Online · National patient survey

Presented at a seminar about our studies on electronic health records in Sweden

 

Earlier today, Åsa Cajander and I held the first lecture in a seminar series which is one part of the collaboration between our division (and especially the HTO group) at Uppsala University and the department “Elektronisk patientjournal” (EPJ) at Akademiska sjukhuset. EPJ’s primary task is to support care staff in planning and documenting the patients’ care process and this is one of the reasons why studies on electronic health records is of high interest to the group.

 

We used a presentation similar to the one we used during our visit to Södertörn University (see this blog post for a discussion about that presentation and the pod cast we were interviewed on). Åsa started by describing the DOME consortium and some key highlights from Journalen’s history. The main part of the presentation was devoted to a role-play activity, which we have tried several times now. As before, Åsa played the physician and I played the patient. Once again, that setup worked great and several questions from the audience (about 20 EPJ-members) were asked during that part of the seminar.

 

Apart from the introductory information, history walkthrough and the role-play (which was based on results from earlier studies with physicians and patients) I also presented some results from the national patient survey study I am leading and this part of the seminar also rendered a lot of questions and comments from the audience. The discussions about the survey study pretty much confirmed that we really have something interesting findings there! I ended the seminar by presenting our plans for the new observation/interview/survey study I am responsible for leading – very soon we will know a lot more about how patients’ access to their electronic health records will affect the work environment for physicians and nurses!

All in all, I am very pleased with the seminar and I especially appreciated the fact that the audience were engaged by asking questions and adding comments to the content Åsa and I presented. I hope we will have the opportunity to get back to EPJ later on and present key findings from the observation/interview/survey study (I really need to come up with a better name here!  🙂 ), which they were really interested in!

eHealth · Medical Records Online

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

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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.”

DOME · eHealth · Medical Records Online · National patient survey

The team behind a new large patient survey on electronic health records in Sweden!

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In my last blog post I introduced the research team behind an interview/survey/observation study focusing on how patients’ access to medical health records online affects the work environment for physicians and nurses. This is probably the largest study I will be working with during my time as postdoc at Uppsala University. The study focuses entirely on medical staff, but what about the patients’ experiences and attitudes? It is of course very important to consider those.

This brings me to the other large study, which is also a part of the DOME consortium, I will lead during my postdoc period – the national patient survey! More than 2500 patients have answered questions spanning over a wide range of topics and we are now analyzing all the data. I have already mentioned the study briefly in earlier blog posts, but this time I will introduce the team, just as I did for the other study. There is a large overlap in that most of the involved researchers are part of both studies;

 

Uppsala University:

·       Jonas Moll (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 the DOME-consortium)  [Blog] [Twitter] [Researchgate]

·       Isto Huvila (A professor in Information Studies at the ALM department)  [Blog] [Twitter] [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]

·       Isabella Scandurra (An assistant professor in Health Informatics at the School of Business)  [Twitter] [Researchgate]

With this patient survey study and the other interview/survey/observation study we will cover both the medical staff’s and the patients’ perspective. I am really looking forward to see what will come out of these studies!

 

DISA · DOME · eHealth · Medical Records Online

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

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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!

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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!  🙂