Two studies published on the effects of patient accessible electronic health records

Members of the HTO group recently got two journal articles published, on the effects of patients accessible electronic health records (PAEHRs) in Sweden.  Both studies were picked up by Swedish media after press releases had been published by Uppsala University.

The first article, “On threats and violence for staff and patient accessible electronic health records” was published September 28 and written by Ulrika Åkerstedt, Åsa Cajander, me and Ture Ålander. The open access article, which you can find here, is based on Ulrika’s masters thesis and presents results from a survey study conducted with healthcare professionals at the emergency and psychiatric departments at Uppsala University Hospital. Among other things, the study showed that the fear of being exposed to threats and violence from patients increased as a consequence of PAEHRs being launched in Region Uppsala. Shortly after the article was published this press release was published by Uppsala University. The news spread from there and Forskning.se, Dagens medicin, SVT Nyheter and Vetenskapsradion all published their own articles based on the press release. Åsa and I were also invited to write a popular science summary on Ciennce.se. The article by Dagens Medicin and the article by SVT Nyheter also took things further by e.g. adding interviews Åsa Cajander and representatives from the psychiatry department in Region Uppsala!

Our second article with a PAEHR theme, “Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden” was published November 1 and written by me, Åsa Cajander and Christiane Grünloh from the HTO-group as well as several other researchers in the DOME consortium (I introduced all researchers that are involved in the study in this blog post). In this article we focus on patients’ attitudes toward and experiences with PAEHRs in Sweden. It is clear from the results that patients really appreciate the possibilities that the Swedish PAEHR system, Journalen, gives them and that patients want access to new results in their PAEHR within a day after a new examination or visit. You can find many more results, and of course more details about the study, in the open access article published here (please help us share the news!). Even this article was presented in a press release from Uppsala University and the news was once again picked up by Forskning.se and we once again got an invitation to write a popular science version on Ciennce.se. This time around Inera (managing Journalen and several other Swedish eHealth systems), published their own press release about the study. The journal IT-Hälsa also wrote an article based on Inera’s release.

Philips Future Health Index 2018 released

Last July, I was approached by someone from the Philips team in London that works on the Future Health Index program. Previously they launched the first part of the 2018 Future Health Index, which is the indicator of the value delivered by 16 national health systems from around the world. For the second part, they wanted to produce some tangible guidelines on how things can improve and drive change within the industry.

In order to develop these guidelines, they interviewed 12 key opinion leaders (KOLs) across the Netherlands, US, UK, Australia, Germany, China, Sweden and Estonia – and I was one of them.

The Interview Questions

The interviewer was so kind to send me the transcript of my interview, otherwise I probably would not have remember them. I really enjoyed talking to him, which is not surprising given that people’s experiences with and attitude toward eHealth services is my PhD topic.

We started with my PhD research and I gave a background on the Swedish patient portal through which Swedish citizens can access their electronic health records online. We talked about the initial reaction from healthcare professionals and the conflict between the project and the local medical association (you can read about it in this article), how patients receive it, and what I think about this situation compared to, for example, Germany. Research within the DOME consortium indicates that the initial concerns of physicians might not have become reality and that many patients value direct access to their records, increased their understanding of their medical issues as well as their sense of control. In relation to that, I was asked whether the lesson would be to impose the intended change even if it is against heavy criticism of particular stakeholders. This really is a tricky question, especially in a context like healthcare in which a power-imbalance between clinician and patient still exists. I think, if real change is supposed to happen, sometimes consensus is impossible if the people who are supposed to change are against it. But at the end of the day, all stakeholders (like patients, family, physicians, therapists, nurses, management, insurance etc.) are (or should be) “in the same boat” so to speak and work together.

One of my favorite quotes on this is from Greenhalgh et al. (2012) who called for more effective inter-stakeholder dialogue in relation to telehealth and telecare:

The different interest groups described in this paper are likely to continue to exist in an uncomfortable truce with one another, competing for dominance as they gain more or less public appeal, professional credibility, political power, resource and so on.

and with reference to Checkland & Holwell (1998) they add:

While consensus is not a realistic or even desirable goal, surfacing such things as assumptions and values, and inviting debate on their significance through intersectoral and interdisciplinary dialogue will help achieve what systems thinkers have called ‘accom- modation’ (acknowledgement of, and adaptation towards, other perspectives and practices).

Future Health Index: Key Recommendations

I recommend to read the full report, which you can download here: Part 1, Part 2. According to the Future Health Index research, ‘universal’ electronic health records plays an important role in the future, for example regarding integration of and more effective use of data. They identified five key concrete recommendations to overcome challenges and drive integrated care:

  1. Get regulation right.Clearly defined polices and robust data privacy and security standards at the national level build confidence in all parts of the healthcare continuum and help healthcare institutions develop their own data codes of practice, as well as encouraging healthcare professionals and the general population to collect, share and analyze data with greater confidence.
  2. Modernize education.Healthcare professionals won’t demand EHRs and AI tools at work if they don’t learn to rely on them during medical training. Increasing healthcare professionals’ adoption of these tools must start with their integration into medical school curriculums.
  3. End top-down implementation.Healthcare professionals are unlikely to adopt new tools when they’re presented as a ‘fait accompli’ by technologists. Creating EHRs and AI solutions in collaboration with both healthcare professionals and the general population will have a significant impact on successful integration.
  4. Prove and explain value.Both healthcare professionals and patients need to be able to easily understand how data collection and analytics tools make a difference. Constantly measuring and communicating outcomes will create a body of evidence that will help bridge the understanding gap.
  5. Harmonize data standards.Companies, healthcare professionals and governments in each market must work together to reach a greater degree of consensus on data formats and protocols.

Parts of this post originally appeared in a slightly different form on the my personal blog.

Workshop at EPJ, Uppsala University Hospital, about eHealth Benefits Realization

I attended a very interesting workshop last Thursday, arranged by Birgitta Wallgren at EPJ (the department for Electronic Patient Records), with the Advisory Board. The topic was eHealth Benefits Realization: “It doesn’t happen all by itself”.

Advisory Board is a global research, technology, and consulting firm helping hospital and health system leaders improve the quality and efficiency of patient care. At this occasion, the Global eHealth Executive Council’s Senior Research Director Doug Thompson discussed the major activities and purposes of eHealth benefits realisation, common challenges, and tools and solutions that could be of value to the hospital in Uppsala. The audience consisted of specially invited people from the hospital, managers (physicians) from different departments and specializations, project leaders, and IT-developers in different roles. The day included the talk from Doug, supported by a power point presentation, some practical exercises, and it included a break for lunch. In smaller groups, we discussed specific issues relevant for our hospital in Uppsala and then presented our ideas to the bigger group. We got valuable input from Doug on our thoughts and ideas.

The general question was how to realize performance improvements at the hospital with the support of information technology, such as the EPR, or clinical decision support (CDS). The message from the Advisory Board is that we need to work structured, and with an awareness that this is not only a “technology project”. By making use of six best practices, developed by the Advisory Board, it is possible to realize more potentials from EPRs than the “low hanging fruit” that were harvested already. The Advisory Board’s model is to have benefit driven implementation and optimization. By clearly stating the wanted benefits and by identifying what mechanisms are driving each benefit (making it occur) you create a common ground for actors where it is possible to analyze problems and decide on valid routes for action. Else, it may happen that your gut feeling is sending you a false image of what is going on. It is important that you know where you want to be heading, and you need some tools to make sure you are on the right track. This conclusion can certainly be of help in many situations in life!

Kick-off for a series of posts on teaching and learning

In addition to the research that we do, many of the members of HTO are involved in lots of teaching activities at the department of IT in Uppsala. Some of the courses we teach are in the area of health care, and here we have a very good collaboration with Region Uppsala. The setup of this collaboration is to aim for a win-win between students learning and the Region’s goals and visions. We have collaborated with the Region since around 2004, and it has resulted in many new learning opportunities as well as input to innovations in health care both for the Region and for the nation.

We also work with innovation and development of learning opportunities in our teaching. Åsa Cajander is a member of the Uppsala Computing Education Research Group, and this community gives lots of input and ideas for improvements of courses.

This semester we collaborate with Region Uppsala through our course on Medical Informatics and the course IT in Society. We also collaborate through joint master theses on topics of interest to the Region. We have asked a couple of our current students to write blog posts about their experiences during their thesis work, and this fall the HTO blog will contain a series of blog posts on teaching and learning activities related to the HTO group.

New Article in Press: Patients’ Experiences of Accessing Their Medical Records

In 2012, Region Uppsala gave its 300,000 citizens access to their medical records through a patient portal. Today, the service called Journalen has become the Swedish national service. The DOME consortium is conducting research on the effects of this service on healthcare and has conducted several research studies before, for example, an interview study with cancer patients, with physicians from different specialities, a survey with patients who have read their paper-based records, surveys with nurses and physicians. Given that the service has been launched already a few years ago, we wanted to investigate patients’ experience with the service and their motivation to access their record

Method: National Patient Survey

The questionnaire for the national patient survey was designed by several researchers in the DOME consortium and was informed by previous studies conducted. The process started in spring 2016 and was coordinated by Hanife Rexhepi from Skövde University. The final questionnaire addressed six areas:

  • General questions related to the PAEHR system
  • Questions targeting experiences from using the content of PAEHR
  • Information security
  • General questions about information needs, behaviour, and information-seeking styles
  • Personal health related questions
  • Demographics

Data was collected through the patient portal from June to October 2016.

Analysis: Overview of National Patient Survey

The questionnaire addressed several important aspects related to patients reading their electronic health records. To give an overview, we focused in this article on the following questions:

  • Why do patients in Sweden use Journalen? And how often do they use it?
  • What types of information are most valued by patients?
  • What are the general attitudes by patients towards Journalen?
  • What differences can be identified with regards to attitudes between different county councils in Sweden?

The analysis and writing process was led by Jonas Moll.

Summary Results

The survey was initiated by 2,587 patients on the national level. The majority of respondents responded to use Journalen about once a month and the most selected reasons for using it were:  1) to receive an overview of one’s own medical history and treatment, 2) to follow up on doctor’s visits, and 3) to become more involved in one’s own care.

The top three reasons why patients believe that Journalen is important are that it 1) makes them feel more informed, 2) improves their communication with care, and 3) results in a better understanding of one’s own health status. The most important resource, according to the survey, is test results. In general, the respondents had a very positive attitudes towards Journalen as a reform and considered access to their medical records as good for them. The attitudes did not differ greatly between respondents from different county councils.

The paper has been accepted for publication by the Journal of Medical Internet Research, is currently in press, and can be read as pre-print here.


Feature Image by rawpixel on Unsplash

Presentation by Åsa Cajander and Jonas Moll at Medical Informatics Europe

During the first day of the Medical Informatics Europe (MIE) Conference Åsa Cajander and I presented the paper that was introduced in this blog post. Actually, this was the first presentation held by representatives from the HTO group during this year’s combined MIE/Vitalis event, but certainly not the last – we were active on stage, or as workshop leaders, during each and every day!

This particular presentation was based on a study that was conducted within the scope of a master’s thesis project at Uppsala University by Sara Englund and Anastasia Hansman. The project focused on the Swedish patient accessible electronic health record system Journalen (and hence was tightly connected to the DOME consortium) and more specifically on how nurses see that Journalen has affected their work environment and their communication with patients.

The result of the semi-structured interviews conducted with the nurses at a primary care center in Region Uppsala, first of all showed similar as our earlier interviews with physicians – Journalen has changed the interaction with patients, created an increased workload and created uncertainty regarding when to inform patients of results now that the patients can read even unsigned notes. Even though most of the results were in line with results from our earlier research in DOME, one new theme arose from the interview analysis – the need for new knowledge. Several nurses indicated that education was needed, focusing on how Journalen should be used both by patients and in the clinician-patient relationship. This is an important result, which should be taken very seriously.

All conference papers are published open access, so you can find all research presented at MIE here. You can find the paper that Åsa and I presented here.

Stay tuned for more posts about the HTO activities at MIE/Vitalis 2018! 🙂

The Effects of Digitalization on the Nurses Work Environment DISA: The Coolest Project @ Uppsala University?

We think that we have a very cool project. We are truly a multidisciplinary team working on digitalization and the effects on the nurses work environment. We also have a very good reference group, and our collaboration with Region Uppsala in the project is fantastic.

When we saw that there was a competition about the coolest project at Uppsala University we nominated ourselves!

They will announce the winners of the competition in a couple of weeks at a faculty pub event. We´ll be there to celebrate with the winners, or perhaps we are the winners?

A Seminar (in Swedish) on the Implementation of IT in Healthcare

Back in December I was invited to give a seminar in Swedish at the EPJ department of Region Uppsala, the department in charge of many of the health-related IT systems used at the hospitals and primary care facilities in the region. My seminar was on the the current state of research in relation to how to implement IT in healthcare. Out of all the perspectives one can use to approach this area of challenges for healthcare, I devoted most of the seminar to presenting barriers and enablers to change management projects as well as IT development projects, and discussing these with the participants. The seminar was recorded and is now available on YouTube, if you find the topic interesting (and are comfortable with the Swedish language).

The HTO group, and more generally the HCI group at the Department of Information Technology, Uppsala University, have an ongoing collaboration with the EPJ department at the region, and there will be more seminars on a variety of topics given by us during the spring.

EIT Health/ACM SIGCHI eHealth Summer School 2017, week 2 in Stockholm and Uppsala

It was great to see everyone again at the second week of the EIT/SIGCHI summer school! It was now already three weeks ago, and I thought I should write a short blog post. The week started at the visualization studio at The Royal Institute of Technology, KTH, Stockholm. We had all prepared a Pecha Kucha – a two minutes presentation about ourselves. It was great to hear about everyone’s research! The afternoon was focused on action research, with discussions about the pros and cons and presentations by Bengt Sandblad from Uppsala University, and the organizers of the second summer school week Jan Gulliksen from KTH and Åsa Cajander from Uppsala University (and the HTO group).

The second day all participants travelled to Uppsala, and the lectures took place in Gustavianum which is the oldest building of Uppsala University. The themes of the day were medical records online and a new surgical planning system implemented at the University Hospital in Uppsala. The lectures were held by Benny Eklund, IT strategist at Uppsala county council, Birgitta Wallgren who is a manager at Uppsala University Hospital, and Gunnar Enlund, chief physician at Uppsala University Hospital. My colleagues Christiane Grünloh, Åsa Cajander, and Jonas Moll also presented results from their studies regarding medical records online!

Wednesday we were back in Stockholm and had a workshop most of the day. We started with trying out different technologies such as VR glasses and tabletop computers. After lunch we had a teamwork exercise where we all developed a computer game together. My group’s task was to create the game sounds and we had a lot of fun doing so, even if we discovered some mistakes when our work was integrated with the rest of the game.

Thursday and Friday we had lectures and also groupwork! It was a great week with many interesting lectures. Read more details about the week in Jonas blog; Day 1, Day 2, Day 3, Day 4, Day 5!

Visiting period at the HTO: Leysan Nurgalieva

Hello! As Jonas kindly nominated me, this is my first scientific blog post and hopefully not the last one. But first of all, let me introduce myself.

My name is Leysan and I am a second year PhD student at University of Trento, north of Italy. My research group works in the field of social informatics, an intersection of human-computer interaction, sociology, cognitive science, and psychology. My background is mainly in computer science but I also have a five-year degree in automation and control systems engineering from Kazan National Research Technological University, Kazan, a beautiful city in Russia where I am originally from.

My main research areas are human-computer interaction and calming interactive design in sensitive contexts such as professional and family caregiving for older adults. I am especially interested in the role of information and the way it could be communicated in order to reduce anxiety related to caregiving and conflicts between caregiving stakeholders like nurses and family members of the nursing home residents.

I am also a member of EIT Digital Doctoral school, whose goal is to provide computer science PhD students with the background in Innovation and Entrepreneurship and create an experience combining research, innovation, entrepreneurship, industry involvement and pan-European mobility. One of the requirements of EIT Digital program is six months of geographical mobility in Europe with the aim to encourage international collaboration and networking within European academia and industry.

EIT Digital is an educational part of the whole EIT initiative, which has several other directions or communities and one of them is EIT Health.

Just a week ago I returned to Trento from the e-health summer school organized by EIT Health, which took place in Dublin and Stockholm. Participation in it was such a great experience, not only from the perspective of invaluable knowledge it provided me with (thanks to the organizers!) but also became an opportunity to discover e-health community and meet research groups that work on similar problems. One of the amazing outcomes of the summer school for me was meeting Åsa Cajander and her research group. After several discussions on our research interests and current projects we work on, we realized that we have a lot in common and I could join them for a visiting period in Uppsala…

And already in the middle of November 2017 I am coming to Sweden to spend my first 3 months at Uppsala University, in the Health Technology and Organisations (HTO) research group. As you see from the photo, we have already had a kick-off meeting with Jonas, Åsa, and Christiane and I am really looking forward to join the team soon!