DOME · eHealth · Medical Records Online · National patient survey

New extended abstract on age-related differences in the experiences of reading patient accessible electronic health records

Age_differences

The national patient survey on patient accessible electronic health records (PAEHRs) in Sweden keeps generating research output. A while ago I wrote a blog post about the first journal publication (an overview article) which was based on the survey and another one about the effects of the press release where the publication was introduced to the public. The fact is that an extended abstract, based on the same study, was published in the Finnish journal Informaatiotutkimus just a few days after the overview article was published.

The extended abstract, with the title “Differences in the experiences of reading medical records online: Elderly, Older and Younger Adults compared” was accepted to the Information Studies Symposium 2018. Isto Huvila, who is leading the analysis and writing processes of the parts of the survey related to information literacy and age-related tendencies, was the first author and the other authors were Kristina Eriksson-Backa, me, Gunilla Myreteg and Maria Hägglund. Kristina is a member of Isto’s project HIBA (Taking Health Information Behaviour into Account: implications of a neglected element for successful implementation of consumer health technologies on older adults) and all others are members of the DOME consortium.

The extended abstract, which can be downloaded for free here, is very short and can be seen as a teaser of what to come. As we conclude in the abstract, there are many interesting significant differences between patients from the three age categories used (Younger adults, Older adults and Elderly) when it comes to experiences of using the Swedish PAEHR system Journalen. Of course, we are not done here – we will dig deep into the data and look for interesting patterns and tendencies which in turn can be used to understand how persons from different age groups are affected by PAEHR.

I will get back to this topic soon, when a conference paper on age and information behavior is formally published. Aside from health literacy and age, we work on several other important topics from the survey like for example psychiatry, cancer and information security so you can expect a lot more from the national patient survey study! Stay tuned for more!  J

conference · Popular science · Uppsala Health Summit

Uppsala Health Summit 2018, part 4: the conclusions

UHS_conclusions

This is my fourth and last post about this year’s version of Uppsala Health Summit, with the theme Care for cancer. I wrote the first three parts during the summer and now when the post-conference report, with the conclusions from the summit, is published it’s time to wrap up the blog series. Here are the links to the first three posts:

My original intention was to write separate blog posts about the different perspectives covered during the summit, but the post conference report (which you can find here) already covers all important aspects.

As I wrote in the earlier blog posts, the two days at Uppsala Health Summit gave me the best overall conference experience I have ever had. Researchers, healthcare professionals, industry representatives, policy makers and patients gathered in Uppsala Castle to discuss various aspects of cancer care and how to push forward in the area. The global perspective was one of the most interesting and important perspectives covered during the summit, at least as I see it. There are very clear differences in e.g. access to high quality care and diagnoses, national infrastructures and survival rates between high-income countries and low-/middle- income countries. The first chapter of the post-conference report, linked above, highlights this as well as other important aspects covered during the summit. The PPT presentations from the plenary speakers as well as the workshops, many of which you can download here, also give a very good overview of the most important aspects covered during the summit. Videos from the plenary sessions will also be available soon.

As I wrote in earlier posts on this subject, Åsa Cajander, Christiane Grünloh and I organized one of the workshops during the second day of the summit: “Using Data for Better Cancer Treatments”. Overall, I think the workshop was a success. In the beginning of the workshop each participant chose a table, representing the role s(he) wanted to focus on during the workshop. The roles were: patient, physician, nurse and researcher. After the groups had been formed, three of the participants presented critical incidents related to the workshop theme. These presentations had been prepared by participants that were recruited by the organizers a few months before the summit. The critical incidents, which covered the physician’s, patient’s and researcher’s perspective respectively, were meant to give inspirations for the upcoming workshop discussions. During the rest of the time before lunch, as well as during the lunch break, the groups discussed barriers and enablers, with regards to using data for cancer treatments. Some of the identified barriers included lack of infrastructure, fragmented data in silos and unclear rules for consent and usage. Enablers that the participants in many groups found important were improved access to mobile phones and networks, improved data storage possibilities and artificial intelligence.

After the lunch break our workshop speaker, Bengt Sandblad from our HTO group at Uppsala University, presented the ideas behind the vision seminar technique – the technique that was used during the next part of the workshop. You can see his presentation slides here. In the vision seminar part of the workshop the groups derived future scenarios, taking into account the barriers and enablers for the role they were focusing on, describing the use of data for cancer treatments in year 2050. During the last 30 minutes the scenarios from each group were presented, by a group representative, in plenum. During these presentations, a professional sketcher, Maja Larsson, drew sketches of the scenarios in real time!

Aside from the scenarios, the workshop resulted in some action points highlighting what needs to be done to reach the visions. Some of these were implementation of standards for interoperability, infrastructure for secure and powerful data transfer, allowing patient contributions and acknowledging that patients own their data.

You find more action points, thorough descriptions of future scenarios as well as a sample of Maja’s sketches in the post-conference report. In that report, you can of course also read about conclusions from all other workshops. I really recommend that you read the report!

So, what’s next? Uppsala Health Summit is a yearly event, and next year’s focus will be Healthy Urban Childhoods. The work with next year’s summit has already began. A few months ago I took part in a brainstorming activity where key aspects were discussed. I’m not sure what role I will play in the next summit, but I really hope that I will once again get the opportunity to organize a workshop and hopefully also join the programme committee!

eHealth · Medical Records Online · Popular science

Some comments on this year’s Research Grand Prix final

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As I wrote in my latest blog post my colleague Hanife Rexhepi participated in this year’s Research Grand Prix final, which took place last Tuesday in Stockholm. The whole event started out with a short introduction by the Swedish actor and comedian Måns Nilsson who was the host of the event. During this introduction he also introduced and talked shortly with the three jury members Katrin Sundberg (Swedish director, actress and writer), Patrik Hadenius (CEO at Utgivarna, an interest organization for Swedish publicists) and Agnes Wold (Swedish senior physician and professor in clinical bacteriology). The jury members focused on different aspects of the presentations – Katrin focused on the performance on stage, Patrik focused on how easy it was to understand the presented research and Agnes focused on how well the research processes were described by the finalists.

After the introduction, the finalists presented one after the other. As I said in my last blog post, the presentations were very short (max 4 minutes) and the given time frame was probably the toughest part of the presentations. It’s certainly not easy to pick a small and yet interesting problem from your years of research and then describe it in four minutes so that everyone can understand its significance, while at the same time delivering a performance up on the stage! After each presentation each jury member gave the presenter some comments based on their focus aspect (performance, understandability and process clarity), after which each of them gave a point in the range 1-5.

Hanife was the second one, out of the seven finalists, to go up on the stage and deliver her research presentation. She did a perfect job on all levels! She remained calm during the entire presentation and delivered all parts of it with confidence, just as I knew she would. She had named her presentation “The tale of your patient record”. The tale started when Uppsala County Council made it possible for patients to access their medical records online in 2012 and the presentation ended with a note that some people in the audience might participate in future studies and in that way help the researchers write the next chapter! The jury members were also very happy with her presentation. Katrin really liked the tale setting and Hanife’s overall performance on stage. Patrik thought the research was presented in a way that made it really easy to follow and understand. Agnes was also very happy with the description of the research process. In the end, Hanife got 4 points from Patrik and 5 from the other jury members, placing her on a shared second place with regards to the jury points.

After all presentations there was a break with a dance performance on stage and after a few minutes it was time for the audience to vote! Before a particular finalist received points (1-5) from the voters s(he) held a mini 30 minutes presentation to remind the voters what the presentation was about. After this reminder we got 10 seconds to cast our votes.

Unfortunately, Hanife did not get one of the first three positions in the competition. The winner was Rezan Güler from Royal Institute of Technology, who held a great four minutes presentation about how one can customize proteins for beating cancer. You can see a picture of all finalists here as well as a description of all of them. On that page you can also find a link to youtube, where you can see the entire final! I can really recommend it to those who understand Swedish!

eHealth · Medical Records Online · Popular science

My colleague Hanife Rexhepi competes in the Forskar Grand Prix final next week!

Hanife

About half a year ago a wrote a blog post about Hanife Rexhepi’s thesis defense which I attended in May. We have been colleagues in the DOME consortium since I joined about two years ago and we have, among other things, held joint presentations at Vitalis and we are currently collaborating on several journal papers which are based on the national patient survey on patient accessible electronic health records. As I wrote in the blog post about her defense she presented her work with great confidence and clarity! That was a scientific presentation but, evidently, she is really good at popular science presentations as well.

About two months ago, Hanife and six of her colleagues from University of Skövde competed in their section of “Forskar Grand Prix” – a competition where the participants should present, during no more than four minutes, their research in the best possible ways. Thus, it’s a science communication competition. Hanife managed to win the competition, with her presentation about patient accessible electronic health records! Here is an interview that you can watch (in Swedish), which was held right after she had been announced as the winner.

Being the winner of the local Forskar Grand Prix means that she will also present her research in the final, which is held in Stockholm next week on Tuesday, November 27! In that final she will compete against six researchers from other universities. You can read about the topic for her presentation here. I will be in the audience during the final and I will also join the gathering afterwards. If you cannot be there, but still want to follow the final and join the voting, you can watch the whole thing live on the page that is linked here. I wish Hanife the best of luck!

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

Another successful press release!

JMIR

As I wrote in my last blog post, an article based on the national patient survey, Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden, was recently published in the Journal of Medical Internet Research. Once again, Åsa Cajander and I wrote a press release that was published a few days after the journal article was published open access. As I wrote in this blog post a press release can really have an impact when it comes to spreading research results to the general public.

As was the case the last time, our new press release was picked up by a number of different sources (once again, all articles about our study are in Swedish):

  • Forskning.se published the article Patienter positiva till att läsa sin journal på nätet. They picked up our earlier press release as well and they once again wrote a re-organized version of the original press release.
  • Ciennce.se once again asked for a popular science summary of our study. That summary remains to be written.
  • Inera.se published the article Patienter positiva till journalen via 1177 Vårdguiden. Inera coordinates and develops digital solutions for healthcare and many other publicly funded areas. They manage Journalen and many other eHealth solutions and they also helped us in distributing and collecting survey responses. Inera’s news about our study was widely spread especially on Twitter.
  • IT-Hälsa published the article Patienter positiva till journalen i 1177 Vårdguiden. IT-hälsa is an online journal which primarily targets everyone who work IT in healthcare. Their article is based on the one Inera wrote.
  • People have also contacted me by email asking about which other parts we will focus on in the patient survey (the recently published article is just the first in a long list of articles about that study) and if we also conduct studies with healthcare professionals.

So, once again it is safe to conclude that it could be a very good idea to publish press releases about research results. I also think it’s safe to conclude that the interest that has been shown highlights that our research is important for society.

DOME · eHealth · Medical Records Online · National patient survey

New article published about the patients’ views on patient accessible electronic health records in Sweden!

JMIR

Last Thursday, the first journal article that is based on the national patient survey about patient accessible electronic health records (PAEHRs) in Sweden was finally published in the Journal of Medical Internet Research! The article, “Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden”, focuses on survey results related to demography, usage and attitudes towards the service, as well as perceived importance of different functions. I led the analysis and the work with this article, which I wrote together with Hanife Rexhepi (who led the design of the survey), Åsa Cajander, Christiane Grünloh (who defended her thesis last Friday!), Isto Huvila, Maria Hägglund, Gunilla Myreteg, Isabella Scandurra and Rose-Mharie Åhlfeldt (see author affiliations in the blog picture above).

In the article we present several results from the first national follow-up study about patients’ views on and experiences with the Swedish PAEHR system Journalen. In total, 2587 patients answered the survey, which could be found on the login page to Journalen during a 5 months period. Some of the key results are:

  • Access to test results is the most important resource for patients (especially interesting, since most county councils did not show test results in Journalen at the time the survey was open)
  • Patients mainly use Journalen to get an overview of their health and contacts with care. Another important reason for use was to follow up on visits.
  • Patients are very positive towards the PAEHR as a reform and the possibilities the system gives them.
  • Patients want access to new results in Journalen within a day after a visit/test (many county councils have a delay period of two weeks before new results are shown to the patient – see this article for more details about that).

The article is published open access here, where you can find more results and details about the study. As was the case for our last study about PAEHRs in Sweden, a press release was published by Uppsala University. You can find the press release (in Swedish) here and another version published by Forskning.se here.

Here is the article’s abstract:

Background: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients’ experiences of using PAEHRs in Sweden or Europe, more generally.

Objective: The objective of our study was to investigate patients’ experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system.

Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents.

Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one’s health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen.

Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way—several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

The research group, consisting of researchers from the DOME consortium, is currently working on quite a few other journal articles about results from the survey where we e.g. focus on and compare different patient and age groups. There is definitely more to say about this study, so stay tuned for more!

DOME · eHealth · Medical Records Online · Thesis defense

Recently attended Christiane Grünloh’s excellent thesis defense at KTH!

Christiane

Last Friday, I spent the entire day at KTH for a DOME consortium meeting in the morning (will get back to that in a separate post) and Christiane Grünloh’s thesis defense in the afternoon. Christiane’s thesis work has focused on patient accessible electronic health records (PAEHRs) in Sweden, and how healthcare professionals and patients have received and are affected by the system. The thesis, “Harmful or Empowering? Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records” can be found here. This was an extra interesting defense for me since some of the work that is included in the thesis and was discussed during the defense, is based on the national patient survey study which I’m leading and have written about several times on this blog! One of the included papers – an overview of the results – was actually published last Thursday! The main supervisor was professor Jan Gulliksen from the School of Electrical Engineering and Computer Science at KTH. The co-supervisors were professor Åsa Cajander from our HTO group at the IT department at Uppsala University, associate professor emeritus Åke Walldius from the same department as Jan Gulliksen and professor Gerhard Hartmann from the Institute of Informatics at TH Köln University of Applied Sciences. The opponent was associate professor David Hendry from the Information School at the University of Washington. The examination committee consisted of professor Geraldine Fitzpatrick from the Institute of Visual Computing and Human-Centered Technology at TU Wien, professor Gunnar Ellingsen from the department of Clinical Medicine at University of Tromsø, and professor Sabine Koch from the Health Informatics Centre at Karolinska Institutet.

After a short introduction by the chairman professor Henrik Artman, the opponent held a presentation about Christiane’s thesis for about 45 minutes. This was by far the best opponent presentation I have heard! David really managed to pinpoint the core foundations on which the thesis work was built and he had even drawn his own charts showing the different stakeholders and how PAEHRs had come to change the interaction between them. He was very well prepared and clear about all parts of the thesis. He, as well as the members of the examination committee, also asked good questions that formed the foundation for really interesting discussions about choices made, theoretical foundations, methods and results.

Christiane really did an excellent job answering questions from the opponent and the examination committee members. She was super calm and structured and answered every question thoroughly and several times during the discussion with the opponent I really felt like she was the one in charge! I’m certainly not the only one who felt that Christiane did an excellent job – both the opponent and the examination committee members commented on that after the defense and several colleagues that I talked to felt the same thing. The meeting between supervisors, the opponent and the members of the examination committee, which was held right after the defense was very short. Geraldine, who presented the obvious result that Christiane passed the defense, said that they couldn’t really find anything that was wrong or could have been done better – they could only discuss good points!