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!  🙂

conference · design · DOME · eHealth

Got a new paper published at Interact 2017!

Interact_published

As I have written in an earlier blog post, a paper on critical incidents and eHealth was submitted and later on accepted for presentation and publication at Interact 2017. Now our paper has been published in the conference proceedings and the presentation is coming up very soon! The full title of the short paper is “Using Critical Incidents in Workshops to Inform eHealth Design” and you can reach the paper here (page 364-373) if you (or a University you are affiliated with) have a Springer subscription. The authors are introduced in the blog post I link to above.

Christiane Grünloh, who is the lead author and the one who coordinated the entire writing process in a very good way, will present the paper at the conference tomorrow, September 27! The presentation concludes a session that focuses on Co-design studies, which starts at 1:30 PM in lecture hall 23. So, if you happen to be at the conference and want to attend her presentation about how one can utilize critical incidents to inform eHealth design you know where to go and when!  🙂

The workshop from NordiCHI 2016, on which the paper is based, was very special for me since I submitted my first research contribution from a patient’s perspective to that very workshop. That workshop contribution, entitled Making a case for easily accessible electronic health records – A patient perspective on lack of availability of health information in critical situations is not behind a paywall so if you are interested in how a patient contribution can look like you can find the paper directly by clicking on the title. It was a very interesting experience for me to use a critical scenario from my own life as a basis for discussion about how to inform eHealth design. The other papers, covering e.g. professionals’ perspectives and design were also very interesting and altogether the different contributions gave a good mix. You can find a collection of all workshop contributions here.

I usually write at least one blog post a week (usually two), but last week I didn’t post anything at all. The reason is a very bad inflammation in an eye. My contacts with healthcare, in different county councils, during last week (and the weekend before) proved to be very interesting most of all because county councils do not share patient record information. Interestingly enough, I had to use my patient accessible electronic health record to transfer important information between county councils! I will write a blog post about my experiences later this week, but since the paper I’m writing about here is to some extent about patient contributions to research I just want to point out that I now have several new ideas about real-life experience contributions based on my experiences from last week!

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.

 

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

 

 

DISA · DOME · eHealth · Interact · Medical Records Online

Another visit from Germany and a lot of good progress!

Christiane_besök2

Christiane Grünloh, who came from Germany to visit as a few weeks ago (see this blog post), came back to us this week. The main reason for her visit was once again to work with us in the large eHealth studies which I’m currently leading. As always, it was nice to have her with us and we got a lot of things done during these few days. First of all, we got several interviews done for this study. I will not discuss results here, since it is too early in the process and nothing has been analyzed, but after these days I’m sure that the study will give a lot of new insight. I also learned that Christiane is a very talented interviewer! It was obvious that she is a good active listener and that she can create a nice atmosphere during the interviews.

While Christiane was here, we also discussed about possibilities for writing CHI-papers and I think we came up with some really good ideas. I will try two write one related to mediated communication and haptic feedback and one, together with other researchers in DOME, related to eHealth. We also discussed ideas for submissions to other conferences. I will of course write more about this in future blog posts.

We also had progress when it came to accepted papers. A while ago I wrote a blog post about some papers being submitted to Interact. Yesterday we learned that one of them, a method paper about a workshop the DOME consortium hosted last autumn, had been conditionally accepted! I will write more about it when we have a final answer after resubmit. This also means that Christiane will get funding for visiting the conference in Mumbai, which in turn means that we (Åsa Cajander, Christiane and I) can submit a prepared workshop paper to the same conference (I will write another post about that if the WS contribution gets accepted)! The other paper we sent to Interact, about nurses’ views on patient accessible electronic health records, did not get accepted this time. But, we do have a plan for the future of that paper.

So, we had a lot of good progress this week and I hope we will have more of these weeks ahead of us!