Council · eHealth · Medical Records Online

Experiences from my first meeting in the eHealth council

In a blog post from last spring I wrote about my new membership in the eHealth council, which belongs to the National Board of Health and Welfare in Sweden. I missed the first meetings due to teaching activities and bad health respectively, but last week I finally made it to my first meeting with the council. It was a very interesting experience. The council meets four times a year, so this was the last meeting 2017. The main focus seems to be on information structures and how to make sure that different county councils e.g. use the same terminology and systems. I will here present some of my experiences from the meeting, without going into too much detail since it doesn’t seem right to blog publicly about what was discussed.

As I have mentioned earlier, many different areas are represented in the council. I currently represent Uppsala University and more specifically “Education”. I don’t really get why that is my main topic, since a representative for “Research” would be just as valuable. Anyhow, coming from a university I represent both education and research and as a matter of fact everything I said during this particular meeting was related to research and possible collaborations with academia.

In the blog post linked above I list more of the roles/organizations that were represented in the council. I think the diversity is one of the strengths of the council – since both healthcare organizations, a few government agencies, healthcare professionals and even patients are represented you can make sure that all important parties are involved when discussing important topics related to e.g. the future of eHealth solutions and how information should be structured in a way that would work for everyone. There was one exception, though. No one in particular seemed to represent “Research”. One could argue that I represent that domain, as I mentioned above, but it is not explicitly stated anywhere. I think a connection to research is extremely important in a council like this.

Several different projects were presented and discussed and I really liked the focus on the user (most often healthcare professionals). In most presentations it was highlighted that healthcare professionals play an important role in projects and policy decisions related to eHealth. This is exactly how it should be!

My input during the meetings mostly concerned the importance of bringing researchers into the different projects. I even suggested research collaborations in some cases, but we will see what happens with that. Since the projects discussed in the council (at least for the moment) focus a lot on user involvement in design and decision processes, I really think HCI researchers can support the projects and at the same time conduct research that will inform future design and decision processes. After the meeting I also brought up Journalen (the patient accessible electronic health record system in Sweden), which is the focus of my own research. When it comes to differences between county councils we have some issues there, like e.g. that the amount of information visible to the patient varies greatly between county councils and that the rules on when to present information differs. This really caught some participants’ interest, so we can definitely expect Journalen to be a topic at a later meeting!

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

Co-authored three submissions to Medical Informatics Europe (MIE) 2018!

MIE_submit

Since the conference Medical Informatics Europe (MIE) is held at the same time and place as Vitalis this year several of the researchers within the DOME consortium as well as in our HTO group at Uppsala University, have submitted quite a few papers to MIE and seminar proposals to Vitalis. In an earlier blog post I wrote about the two proposals I wrote to Vitalis, which both focused on different aspects of patients accessible electronic health records.

Aside from writing proposals to Vitalis, I also co-authored three MIE papers together with several DOME colleagues. One of those papers focuses on how patient access to medical records online is affecting the work environment for nurses and I wrote it together with Åsa Cajander. It’s actually based on an earlier master’s thesis which Åsa supervised. This paper was done quite a while ago.

The two other papers were based partly on results from the national patient survey study which I am currently leading (we have been at the analyses/reporting stage for quite a while). One of those papers focuses on delay periods (before patients can access information in their electronic health record) for signed and unsigned notes and how these differ between county councils. Maria Hägglund was the main author and Rose-Mharie Åhlfeldt and Isabella Scandurra were the other co-authors.

The second paper which was based on the patient survey focuses on psychiatry records online – an area which we will focus on much more in the near future. I will explain why in a later blog post about upcoming activities. I wrote this paper together with Gunilla Myreteg, who was the main author.

Here you can find an introduction of all researchers working with the national patients survey. I should not give any more details right now about specific analysis results or focus themes in the national survey study since that could interfere with later blind review processes. But I can tell you that the results covered in the very short MIE submissions (five pages is the limit!) are just small parts of the material we have regarding a few of the focus areas we are covering in that study. We are just getting started!  🙂

The deadline for MIE-submissions was last Sunday, November 12. January 20 the authors will get the verdicts (accept/reject). I can hardly wait!

 

conference · DOME · eHealth · Medical Records Online · Vitalis

Recently submitted two seminar proposals to Vitalis

The deadline for submitting seminar proposals to Vitalis 2018 was last Friday, October 20. I almost missed that deadline, since I was so focused on the Medical Informatics Europe (MIE) 2018 conference which is held at the same time and place as Vitalis. I was, however, reminded a few hours before deadline and managed to submit two proposals (this is the first year I submit anything to Vitalis). 

Vitalis is a great place to be at for everyone interested in eHealth and progress/innovation in healthcare in general. It is mainly a Swedish event and gather researchers, business leaders, politicians, healthcare professionals and several other visitor categories. Last year I participated in Vitalis for the first time and I really enjoyed it! My favorite part was of course the 1,5 hours session organized by the DOME consortium. I especially enjoyed the team work both during our event itself and during the planning. My best conference experience ever, by far! The focus of that session was the state of art regarding patient accessible electronic health records in Sweden. You can read my blog post about all parts of that session here

Hopefully, at least one of my proposals will be accepted. Both of them focus on patient accessible electronic health records. One of my proposed sessions focuses on a recent study about how these online health records affect the work environment for nurses. The other proposal focuses on results from my large ongoing studies within the DOME consortium. There will be a lot of interesting material from those studies to discuss when we reach Vitalis! DOME usually draws a big audience at Vitalis, so hopefully at least the second proposal will be accepted. If it is, I hope that many DOME colleagues will join me so we can throw a similar kind of party as we did last time!  😉

Apart from submitting proposals to Vitalis I will also co-author three full papers, together with several DOME colleagues, to the MIE conference and probably submit a workshop proposal to MIE. I will write about those later on. If all goes well, there will be some busy days for the DOME researchers during the Vitalis/MIE conference period, April 24-26 2018!

DOME · eHealth · Medical Records Online

Took part in yet another rewarding DOME consortium meeting!

HIBA_workshop2

During Tuesday and Wednesday this week we had this autumn’s DOME consortium meeting. This time we met at Uppsala University. As always, it is nice to meet the DOME colleagues from other universities in person after a longer period of meetings only through Skype. Those who were (physically) present during the first day were Åsa Cajander, Thomas Lind, Gunilla Myreteg and I from our HTO group at Uppsala University, Rose-Mharie Åhlfeldt from University of Skövde and Bridget Kane from Karlstad University (our newest member). Christiane Grünloh from KTH and Hanife Rexhepi from University of Skövde joined us through Skype during parts of the meeting. Åsa, Christiane and Hanife were not joining the second day, and the afternoon was spent with Isto Huvila from Uppsala University and some other members from his project HIBA (more about this below).

The first day started out with a follow-up discussion about the workshop performed at the last DOME consortium meeting in Skövde (see this blog post). Unfortunately, I missed that part since I had an overlap with a pedagogical course I’m taking. I could, however, join during a discussion about planned and ongoing activities. It was really inspiring to take part in that discussion – there are several studies up and running and there are so many things we want to do in the future! The ongoing studies that we discussed cover all of DOMEs workpackages which cover healthcare professionals, patients/relatives and IT development, respectively. One of the new areas discussed, brought up by Bridget, was tele-conference solutions in healthcare. We have both been studying that area in the past and a new project related to e.g. Skype meetings with physicians would be super interesting (but, then again, that goes for all the planned activities).

Other topics that we covered during the Tuesday were e.g. marketing strategies – how can we make sure that news about the consortium and our ongoing activities as well as results are spread to a wide audience. I think everyone who knows about DOME realizes that what we are doing is important. Anyhow, I will try to do my part by e.g. writing on this blog about the parts of DOME that I’m involved in and have a lot of knowledge about. Since the research is focused on different aspects of patient accessible electronic health records (and sometimes also other eHealth services) the research really concerns all of us, so I really encourage you to check out the DOME website. The consortium also has a Twitter handle, DOME_co.

After a rather long discussion about studies and other activities a few of us had dinner at a restaurant in central Uppsala. That was a very nice round-off of the first day.
The second day began with discussions about the overview article about the national patient survey which is now very close to being finalized. Then we continued talking about possible funding opportunities. Several DOME members are currently involved in research projects, but the consortium as such is not funded. Just before lunch, however, we may have found a very good option. There are also e.g. interesting EU funding opportunities coming up within the next couple of years.

After lunch we joined Isto and his colleagues Kristina Eriksson-Backa, Heidi Enwald and Noora Hirvonen – all from the HIBA (Taking Health Information Behaviour into Account: implications of a neglected element for successful implementation of consumer health technologies on older adults) project. It was interesting to meet that group and it turned out that we have quite a lot in common! You can read about the HIBA project here. Isto started out by introducing the HIBA project (see picture above), after which Rose-Mharie briefly introduced the DOME consortium. After this I presented results from the national patient survey, especially regarding differences between patients belonging to different disease groups. It turns out that there are several noticeable differences for several of the topics covered in the survey! I will of course get back to that in later blog posts.

After the presentations we then had a discussion about the similarities between the research performed in HIBA and by the DOME consortium, respectively and we also discussed an extensive literature review conducted within the HIBA project. After this session everyone seemed to feel that we should collaborate when possible.

These two days were very rewarding and I’m already looking forward to the next meeting. There will be two important DOME events next spring. Hanife will defend her thesis and Christiane will have her final seminar! Most probably, we will combine the next DOME consortium meetings with one of those events.

DOME · eHealth · Haptics · Medical applications · Medical Records Online · National patient survey · Summer school

Today I celebrate my blog’s first anniversary!

Ren1

Exactly one year ago I wrote my very first blog post! You can read that short post here. From the beginning my intention was to write two posts a week, but for different reasons my average during this first year is 1.4/week. During this first year the blog has had 2782 views by 1466 visitors. During the first couple of months the number of views were under 100, but I’m glad to see that the numbers have kept increasing – the number of views in September was 491, and 53 views have been accumulated during the first days of October this year.

Since this is a special blog post, the picture I chose is not by any means related to my work. Instead, I chose one of the pictures I took while hiking in northern Sweden (Abisko) about two years ago – I just love the nature up there!

As a kind of celebration, I will here present a top 5 list with the five most read posts:

  1. My colleague, Thomas Lind, successfully defended his thesis today!

This is one of my latest posts, which I uploaded in the middle of September. Despite the short time frame this is, by far, the most read post! The post is about the defense resulting in my colleague, Thomas Lind, getting a Ph.D. degree.

  1. EHealth summer school in Dublin, day 5

Those who have followed my blog during the latest months know that I have been writing quite extensively about a summer school I attended – one week in Dublin and one week in Stockholm. I’m very happy to see that one of those posts is on this list, because it took quite a lot of time to write them. This particular post is also a kind of summary post which includes links to the other posts about the week in Dublin. The summer school was a nice experience in so many ways and I really encourage you to read those posts if you are interested in eHealth/mHealth design (the Stockholm posts, although not on the top 5 lists, can be found here).

  1. A very successful session about patient accessible electronic health records at Vitalis 2017!

This post is not only on the top 5 list regarding views, but it is, by far, the most shared post on social media. The post summarizes an 1.5 hours session hosted by the DOME consortium at Vitalis last spring. I really hope we will get the opportunity to do something similar at Vitalis 2018! Read this post if you want to know about the state of art regarding patient accessible electronic health records in Sweden.

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

I’m also happy to see this one on the list – since this post represents one of the big studies I’m currently leading. This particular study is based on a large national survey focusing on patients’ experiences with and attitudes towards the patient accessible electronic health system Journalen. In this post I introduce all researchers that work with the study.

  1. Haptic feedback in medical applications

The fifth most read post belongs to the blog series on haptic feedback as an interaction modality, which I started last autumn. This particular one concerns how haptic feedback can be utilized in medical applications. In this post I also introduce my own work within this area, which I carried out as a Ph.D. student at KTH.

So, these were my five most read posts, and I’m glad to see that they relate to different areas. The only area not covered in this list is pedagogical development. This might change during the next year, however, since I will most probably get an extensive study on Twitter as a communication medium in higher education courses published and I will also write a series of posts about a basic course in human-computer interaction which I will be responsible for at Uppsala University (starting October 30).

I have really enjoyed the blogging activity and will definitely continue to update this blog regularly, so stay tuned for more!  🙂

eHealth · Medical Records Online

I recently used my patient accessible electronic health record as a communication tool during doctor’s visits!

Journalen

As I mentioned in my last blog post I got a pretty bad eye inflammation about two weeks ago which, among other things, prevented me from writing blog posts (or anything else for that matter) during last week. I will here write about two healthcare encounters during last week from a patient’s perspective, since I could make use of my patient accessible electronic health record, “Journalen”, in quite an interesting way as a kind of communication tool during the visits! I will write about this from a research perspective later on.

Everything started when I was at my country side at Gräsö in Uppsala County Council two weeks ago. I felt more and more pain in one of my eyes. After lunch I had no other choice but to visit an emergency ward close to Gräsö (also in Uppsala County Council). Quite soon I got the chance to discuss my current condition with a physician and of course my health history and current medications were important topics. As I have written in e.g. this earlier blog post I have a history of regular hospital visits due to a couple of auto-immune diseases and the immunosuppressive medication I need to take. There is quite a story to tell, and it’s hard for me as a patient, as well as for the physician who had never met me before, to know which parts of my medical history are the most important in this particular case. And it doesn’t really help that I’m a “Stockholm patient” – there is really no easy and fast way in which a physician in another county council (like Uppsala, in this case) can access most of my medical history. In the middle of the discussion I came to think about my patient accessible electronic health record – the physician cannot access any part of my health record, but I can do it from my phone! So, I asked if it would help if I showed an example note from my physician in Stockholm, summarizing who I am as a patient. After we had reached a consensus that it was a good idea, I logged in and opened an old note summarizing my health conditions and current medications. The physician read through the text and then we discussed a few of the points mentioned in the old visit note. I’m not sure if the outcome of the visit was affected by the discussion around the old visit note, but one conclusion drawn was that the condition in my eye could be linked to my other health conditions. But the story doesn’t end here – they didn’t have access to the right equipment at the emergency ward, so the antibiotic salve (prescribed in most eye infection cases) I got might not help. Thus, we concluded that I must seek hospital care in Stockholm if I noticed that the salve had no effect. Before I left I brought up the topic of health record access again and asked the physician to document my visit in the record as soon as possible, so that I could show his notes in Stockholm if needed (physicians in Stockholm cannot reach health data recorded in Uppsala). He agreed to do that.

It didn’t take many days until I realized that the salve indeed had no effect and I needed to go to an emergency ward in Stockholm where they had the right equipment. When I met the physician I was of course asked when and how everything started and after giving a brief summary I showed the recently registered (but yet unsigned) notes made by the physician in Uppsala! Once again, we had a short discussion based on the content of the note I showed. The conclusion made in the end was that the eye inflammation was indeed connected to my other auto-immune conditions and the new treatment with cortisone drops seems to work.

I’m not sure how much my use of the patient accessible electronic health record Journalen helped during the above mentioned visits, but two things seem very clear:

  • I could use my access to Journalen to transfer important information about my own health, not easily accessible by the physicians, between county councils.
  • Journalen could definitely be used as a tool to support communication between me and the physicians in a way that was beneficial for us both.

Later on, I will try to put this in a research context. Right now, I just want to give these examples of how a patient accessible electronic health record can be used as a communication tool during doctor’s visits!

DOME · eHealth · Medical Records Online · Summer school

EHealth summer school in Uppsala, day 2!

The second day of this week’s summer school was spent at Uppsala University in Gustavianum – one of the University’s oldest buildings. This was a lecture intense day, with many interesting areas covered and apart from researchers from Uppsala Univeristy, there was also a physician, an IT-strategist and a manager among the speakers!

The first half of this day was focused on patient accessible electronic health records. Benny Eklund, IT strategist at Uppsala county council, started out by discussing some of the highlights from the winding journey towards establishing patient accessible electronic health records in Sweden. Among other things he mentioned important enablers, barriers and success factors. He also brought up the contrast between the medical professionals’ fears and the patients’ overall positive response towards the possibilities that the system can give. Benny also demoed Journalen. 

The next two talks, about the professionals’ perspective and the patients’ perspective, were related to the contrast that Benny brought up. Christiane Grünloh (see picture above) and Åsa Cajander brought up the professionals’ perspective and I presented the patients’ perspective in the form of results from the national patient survey I have been writing about before on this blog. Common issues raised by doctors were e.g. that they see the record as their work tool (primarily for communication among medical professionals, not with patients), that the workflow can be disrupted (patients see results before they do), and that workload increases (more calls, etc.). When it comes to patients the results are a lot more positive regarding attitudes and possibilities. I will write more about results from the survey when those results are published. 

After lunch Birgitta Wallgren, who has had different manager positions at Uppsala University Hospital for years, talked about work with a new surgical planning system. She made several important points and I will only bring up a few here. One of the main points was that you need to know as well as respect the organization structure if you want to make a change, conduct studies, etc. If you just pick someone in the middle of the organization it will not work – you need to locate the right manager. In this case she managed to gather 19 medical professionals at various levels one day a week during 4 months! That is quite impressive! Another point related to the workflow. She emphasised several times that it is of utmost importance to take the workflow into account when designing new systems – this was the first thing they did when they started to work towards the new surgical planning system the talk focused on (they also mapped out the work process they wanted to have – this is not necessarily the same as the current one). Based on the results they started designing a system which was adapted to the target workflow. The 19 medical professionals mentioned above made sure that the team was on the right track. 

The last speaker was Gunnar Enlund, chief physician at Uppsala University Hospital. He discussed practical consequences of IT-systems in an operating theater. One of his first pictures showed (a simplified) chart with available IT-systems and how they depended on each other. That chart was very complex! He also campared the situation long ago (one doctor for each patient) to the situation today (often over 100 medical professionals per patient). This highlights the importance of 1) designing for working teams and 2) designing systems that are usable for different teams in different parts of the care process. He also brought up several examples of how IT-systems can cause stress. One key problem, which was in focus during the end of the talk was that of integration. Quite often the same information needs to be registered in two different systems, since values entered in one system are not automatically copied! This certainly doesn’t save time! They have been working on this issue for quite some time, but they currently don’t have a working solution for the integration problem. 

Before I end this post I also want to mention today’s lunch break which included a guided tour between some of the important buildings close to Gustavianum (like the cathedral and University library) and Gustavianum itself! Unfortunately I could not take an active part in the guiding activity, but my colleagues from Uppsala University presented one builing and two famous Swedes each. It was a very nice and well organized activity!