eHealth · DOME · 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!

DOME · eHealth · Medical Records Online

About research on patient accessible electronic health records

domelogo

Last week I wrote a blog post about the second part of the eHealth summer school in Stockholm August 21-25. The second day, spent in Uppsala, will focus a lot on patient accessible electronic health records (PAEHRs) and this is one of the reasons why I will link to some of my key posts on the topic here. Most of the information here is closely linked to the DOME consortium, gathering researchers, focusing on different aspects of PAEHRs, from several Swedish universities. At the end I will also reference some important PAEHR initiatives in other countries.

 

General information about research on PAEHRs in Sweden

In the blog post Seminar about the history of patient accessible electronic health records in Sweden, some of the early history and background to the Swedish PAEHR system in use today, Journalen, is presented. Among other things, I describe the role Uppsala University has played. The post includes a link to a youtube video, where we see Benny Eklund, one of the main drivers behind the PAEHR implementation in Sweden, present some of the barriers and enablers from the early years.

In the blog post A very successful session about patient accessible electronic health records at Vitalis 2017!, you can find a summary of a presentation organized by the DOME consortium at Vitalis in spring 2017. The presentation gives an overview of the current state of the PAEHR system in Sweden as well as some of the latest research.

In the blog post Interviewed on a podcast!, there is a link to a podcast, administered by Södertörn University, where Åsa Cajander and I discuss some of the research conducted within the DOME consortium as well as some future studies. The interview is in Swedish.

Two times a year the DOME researchers gather at one of the universities represented within the consortium. At these meetings, or DOME conferences, we discuss both research and the consortium as such. The posts A week filled with eHealth-related activities! and Some thoughts about the last DOME consortium meeting in Skövde summarize two of these meetings.

 

About ongoing studies

For the moment, I lead two studies on the effects of PAEHRs. One of them focuses on doctors and nurses and how their work environment is affected by patients being able to access their own medical records online. Another focus in this study is on how the communication between care professionals and patients has been affected. This observation/interview/survey study, as well as the team behind it, is introduced here: The team behind a new large study on electronic health records in Sweden.

The other study focuses on the patients and their use of and attitudes towards the Swedish PAEHR system Journalen. This large national survey study, as well as the team behind it, is presented here: The team behind a new large patient survey on electronic health records in Sweden!.

 

Blog posts and research from the patient’s perspective

Since I’m not only an eHealth researcher but also a patient suffering from a chronic rheumatical disease, I have also written a few reflections on the Swedish PAEHR system from the patient’s perspective. I e.g. wrote this blog post after I had been able to see test results in my PAEHR for the first time: Now I can see new test results in my online electronic health record!.

I have also acted as a patient in some conferences. One example of this was a workshop in Oslo, which focused on if electronic access to the health record really was a service for all. Apart from being one of the organizers, I also played the patient in a role play activity. You can read more about this here: Organized a workshop in Oslo!.

Up until today, I have only written one research paper from a patient’s perspective – a workshop paper where I tried to make a case for easily accessible electronic health records. You can read about that contribution, and the very interesting critical incidents workshop, here: My first workshop contribution from a patient’s perspective!   .

 

PAEHRs in other countries

Sweden is far from the only country where the citizens can make use of a PAEHR system. One of the most known, where patients are invited to read clinical notes, is OpenNotes in the USA. The OpenNotes movement really seems to be a success story, appreciated by both care professionals and patients. You can read more about OpenNotes here and you can also follow @myopennotes on Twitter. Another example, which also seems to be one of the success stories regarding PAEHRs, is myUHN Patient Portal in Canada. Their system is similar to the Swedish system and you can read about it here. You can also follow @myUHNPortal on Twitter.

 

eHealth · Medical Records Online · Summer school

Preparing for the second week of the eHealth summer school

KTH

During the last week of June I wrote a series of blog posts about an eHealth summer school I participated in, together with some colleagues from Uppsala University and KTH as well as several other Ph.D. students and postdocs from around the world. That week of activities, which we spent at Trinity College Dublin, was very well organized and I’m very glad I got the opportunity to be there and experience every part of it. You can read about the content and my experiences of it in these blog posts:

Now, we are approaching the second week of the summer school, which will be held in Stockholm (KTH) and Uppsala (Uppsala University). I’m really excited about getting to meet everyone again and experience a new week filled with interesting lectures and exercises! During the last day of the week in Dublin the organizers of the second week – Jan Gulliksen and Åsa Cajander – presented the plan for the week in Stockholm (you can read a summary of that presentation if you follow the link to Day 5 above). We got two small tasks to work with during the summer:

  1. Come up with a citation of our own work, as a means of illustrating how we want other researchers to cite us.
  2. Prepare a Pecha Kucha (using a template), presenting ourselves as researchers, our research, the citation from 1) and a kind of personal fun fact.

Today, I have been working with those two tasks. Coming up with the citation was certainly not easy, since I have been working in quite a lot of fields. But since everything I do relate to mediated communication and a rather special analysis technique (focusing on how technology affects the means by which we talk to each other) I settled for a citation related to how the methodology I have been using can be applied by others. I will not show the citation here – everything will be revealed during the first day in Stockholm! 🙂

Preparing the Pecha Kucha was also quite hard due to my many research areas. My first idea was to focus entirely on eHealth (since this is an eHealth school), but that would give far from a complete picture of what I’m doing as a researcher. I will instead try to browse through all three of my main areas multimodal communication, eHealth and social media in higher education. I’m really looking forward to see the other participants’ presentations. We will all present just before lunch during the first day in Stockholm.

Preparing the two small tasks mentioned above is not the only thing I need to do before the second week of the summer school starts. During the Tuesday, which we will spend in Uppsala, I will be one of the speakers! I will present and discuss the results from the national patient survey (a short version of that presentation was held at the Vitalis presentation last spring, see this blog post). It will definitely be an interesting experience to be a speaker as well as a participant. Christiane Grünloh, my colleague from KTH, has the same situation – she will, together with Åsa Cajander, present and discuss the professionals’ perspective right before my presentation. During that same day in Uppsala there will also be presentations by medical professionals and other stake holders.

Another thing that was announced the last day in Dublin, during the presentation of the Stockholm week, was that the participants should help deciding what we should do the last two days in Stockholm. Those two days are still blank in the schedule so I guess the content will be revealed during the first day in Stockholm. I’m really looking forward to see what will happen there! Unfortunately, I did not think about it when the ideas for content were collected, but one very interesting activity could be a variant of the critical incident workshop that I wrote about here and here. I really enjoyed that workshop and many interesting ideas came out of it. Anyhow, the presentations and activities during the first three days seem really interesting, so I’m positive we will have two great final Days!

DOME · eHealth · Medical Records Online

Seminar about the history of patient accessible electronic health records in Sweden

A few months ago I participated in a very interesting session in the seminar series “Current challenges in biomedical information technology” at Uppsala University. The invited speaker was Benny Eklund, IT Strategist, Uppsala county council. Benny’s work and initiatives – starting about 20 years ago – is probably the main reason why we have patient accessible electronic health records in most county councils in Sweden today (the few ones remaining will allow access before we leave 2017). See link to the filmed presentation below!

Åsa Cajander, who has collaborated with Benny for years introduced him before he began his presentation. As she reveals in the introduction students in one of her courses, “IT in society” played a very important role when they, during one of the course rounds, investigated future possibilities for medical records online in Sweden (a topic provided by Benny). The students’ work resulted in a white paper, which was presented in Brussels! Their work certainly helped in attracting necessary funding.

During the session Benny talked mostly about the early history of patient accessible electronic health records in Sweden, like e.g. important decisions made, the many barriers encountered as well as identified enablers and functions included. After listening to the talk it became more clear to me than before that there were many bumps in the road towards the system in use today. I really recommend you to watch the video – I’m convinced that the barriers and enablers brought up to discussion are relevant in many other countries as well where similar systems have been or are about to be introduced.

Link to presentation