eHealth · Medical Records Online · NORDeHEALTH

New conference paper on minor and parental access to electronic health records in four countries

As I wrote in my previous blog post, I was one of the co-authors of two papers that were submitted to and accepted by the Medical Informatics Europe 2022 conference. This blog post is about the second paper, with the title “Minor and Parental Access to Electronic Health Records: Differences Across Four Countries”. This paper is also based on results from the socio-technical analysis of patient accessible electronic health records (PAEHRs) in the four different countries Estonia, Finland, Norway and Sweden that was performed within the NordForsk-funded eHealth project NORDeHEALTH. Josefin Hagström, a doctoral student from Uppsala University focusing on PAEHR access for children and adolescents as well as their care givers (proxy access), was the main author and the other co-authors were Isabella Scandurra, Charlotte Blease, Barbara Haage, Iiris Hörhammer and Maria Hägglund.

Also in this case we did a cross-country comparison between the four countries, but for this paper the focus was on differences and similarities regarding access policies for children, adolescents and parents. We could identify many differences between the compared countries regarding for example at what age adolescents gain access to their PAEHR and for how many years (counted from a child’s birth) the parents have automatic proxy access to the child’s PAEHR. If we take Sweden as an example, we have quite a complicated situation regarding minor and parental access. Parents in Sweden have automatic proxy access to a child’s PAEHR until the child turn 13. The child then gets automatic access to his/her PAEHR from the age of 16. There is a gap here (13-16) where no one gets (automatic) access to the PAEHR. Both the adolescent and the parents can apply for access during this period, though. The implications of this, as well as of the corresponding policies in the other compared countries, are further discussed in the paper.

This paper has also been published Open Access and can be accessed here.

And here is the abstract:

An increasing number of countries are implementing patient access to electronic health records (EHR). However, EHR access for parents, children and adolescents presents ethical challenges of data integrity, and regulations vary across providers, regions, and countries. In the present study, we compare EHR access policy for parents, children and adolescents in four countries. Documentation from three areas: upper age limit of minors for which parents have access; age at which minors obtain access; and possibilities of access restriction and extension was collected from Sweden, Norway, Finland, and Estonia. Results showed that while all systems provided parents with automatic proxy access, age limits for its expiry differed. Furthermore, a lower minimum age than 18 for adolescent access was present in two of four countries. Differences between countries and potential implications for adolescents are discussed. We conclude that experiences of various approaches should be explored to promote the development of EHR regulations for parents, children and adolescents that increases safety, quality, and equality of care.

conference · DOME · eHealth · Medical Records Online · NORDeHEALTH

New conference paper on psychiatric records online in four countries

During late autumn 2021 and spring 2022 I collaborated with colleagues from the NORDeHEALTH project in writing two conference papers to the Medical Informatics Europe 2022 conference. Both papers were based on a socio-technical analysis of patient accessible electronic health records (PAEHRs) that was performed within the scope of the work package “National socio-technical contexts and policies” that Isabella Scandurra and I are co-leading. Both papers were accepted and presented at the conference in May and this blog post concerns the one focusing on psychiatric records online. The title of the paper is “Patients’ Access to Their Psychiatric Records – A Comparison of Four Countries”.

In the paper we are doing a cross-country comparison between Sweden, Finland, Norway and Estonia (the countries that are represented in the NORDeHEALTH project), focusing on differences and similarities in what clinical information is shared in the PAEHR regarding psychiatric conditions. We found many similarities, but also some important differences regarding for example the type of notes shared in the different countries. Annika Bärkås, a doctoral student from Uppsala University focusing on patients’ access to mental health records, was the main author and the other co-authors were Maria Hägglund, Åsa Cajander, Hanife Rexhepi, Iiris Hörhammer, Charlotte Blease and Isabella Scandurra.

The paper was published Open Access (this is the case for all papers from this particular conference) and can be found here.

Here is the abstract:

Several Nordic and Baltic countries are forerunners in the digitalization of patient eHealth services and have since long implemented psychiatric records as parts of the eHealth services. There are country-specific differences in what clinical information is offered to patients concerning their online patient accessible psychiatric records. This study explores national differences in Sweden, Norway, Finland, and Estonia in patient access to their psychiatric records. Data was collected through a socio-technical data collection template developed during a workshop series and then analyzed in a cross-country comparison focusing on items related to psychiatry records online. The results show that psychiatric records online are offered to patients in all four countries, and provide the same functionality and similar psychiatry information. Overall, the conclusion is that experiences of various functionalities should be scrutinized to promote transparency of psychiatric records as part of the national eHealth services to increase equality of care and patient empowerment.

DOME · eHealth · Medical Records Online · NORDeHEALTH

International survey on experiences with patient accessible electronic health records

Today (January 24, 2022), an international survey was launched in Sweden, Finland, Norway and Estonia. Some of you may already have seen this press release about it from Örebro University that was published last week. The survey, that focuses on attitudes towards and experiences with patient accessible electronic health records (PAEHRs), is a part of the NordForsk-funded project NORDeHEALTH which I introduced in an earlier post. Citizens in the participating countries can access the survey by logging in to the respective national patient portal (the blog image above shows how it looked when I just logged in to the Swedish system, “Journalen”). The results will not only tell us about the citizens’ experiences with the PAEHR system in each respective country, but also enable us to do comparisons between the countries. During the last part of the NORDeHEALTH project we will, through a user-centered design process, prototype new eHealth services for patients – the results from the international survey will surely provide very valuable input to that work. So, please participate in the survey if you have the possibility.

If you want to know more about NORDeHEALTH, you can watch the short video below where some of my colleagues from Sweden, Finland, Norway and Estonia describe what the project is about and why it’s important.

DOME · eHealth · Grant application · Medical Records Online · NORDeHEALTH

Looking back at the first two years of research at Örebro University, part 1: eHealth services for patients

In my last blog post I began my summary of the first half of my assistant professorship at Örebro University. In this blog post I will write more about the research part. During these last two years I have conducted research within these three different areas:

  • eHealth services for patients
  • accessible collaborative digital learning environments
  • teaching in higher education

My initial idea was to write one single blog post where I would summarize my research activities within all these areas, but I soon realized that the blog post would be too long. Instead, this post will focus on the first area, and the next two posts will focus on the second and third area, respectively.

eHealth services for patients

Just like I was before I started working at Örebro University, I have been a regular member of the DOME (Development of Online Medical records and E-health services) research consortium. This consortium gathers researchers from several Swedish universities and I have really enjoyed the collaboration with other DOME-researchers ever since I joined 2016. At the time I started up my assistant professorship, DOME was not externally funded (members were involved in e.g. Forte projects, but the consortium was not funded as a whole). During the first months at Örebro University I was one of many DOME researchers who wrote an application to NordForsk, in collaboration with partners from Finland, Norway, Estonia and USA. This was of course a great opportunity to fund the consortium as well as strengthening the collaboration with researchers in other countries who also focus on the implementation and effects of eHealth services for patients. The result of this hard work was the NordForsk-funded project NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future)! You can read more about the partners and the focus of the project in this blog post and of course on the official project webpage. The three-year project has now been running for around 8 months. Our project leader, Maria Hägglund from Uppsala University, leads management meetings each month, where most researchers participate, and we also have shorter informal “coffee and chat” sessions twice a month.

I really enjoy being a part of the NORDeHEALTH project and we have a really nice mix of researchers from several different disciplines! The only real down side up to this point is related to the pandemic – we have been working together for several months and we have still not gotten the opportunity to actually meet in person. Hopefully, we will be able to meet for the first time in December.

My responsibilities in the project are to lead the team at Örebro University and to co-lead the work package “WP 2 – National socio-technical contexts and policies” together with Isabella Scandurra. In this blog post you can read about the first months of work in our work package. We are currently working with collecting data related to the Swedish patient portal 1177 and the Swedish patient accessible electronic health record system Journalen. It will be very interesting to compare the results from the different countries later on during the autumn! Quite soon, large surveys will also be distributed in the participating Nordic countries and interview studies with both patients and healthcare professionals will be carried out. I will get back on this later on. There is no doubt that this project will play an important role when it comes to for example the understanding of the implementation and effects of eHealth services for patients, as well as future development of these kinds of services (at least) in the Nordic countries.

Before NORDeHEALTH started, I mostly worked with data from the large national patient survey that I have been writing about many times on this blog, and I was also part of a smaller research collaboration with my colleague Gunnar Klein and Region Örebro regarding the region’s implementation of video visits in primary care. Hopefully, new funding will come in making it possible to study both the implementation and initial effects of engaging in video visits, in depth. I would definitely welcome such a research project. I mentioned the successful research application above, but of course some unsuccessful ones were handed in as well. Four applications (one to the Swedish Research Council, one to AFA Insurances and two to Forte) were declined. Three of them were focusing on different aspects of patient accessible electronic health records and shared decision making and the fourth, to AFA Insurances, focused on how digital technology could be, and should be, used when relatives communicate with dying relatives without being able to meet in person. I assume that we will be making new rounds with the applications during this autumn and next year.

When it comes to conferences I have participated in both Vitalis and The International Symposium for Health Information Management Research (ISHIMR), which were both held online. You can read about my online Vitalis experience here and you can actually find the video presentation that Hanife Rexhepi and I used for the ISHIMR conference here.

Distance work · DOME · eHealth · Grant application · Haptics · NORDeHEALTH

Just reached half-time of my assistant professorship at Örebro University!

In the beginning of August 2019 I started off my work as an assistant professor in Informatics at Örebro University. The assistant professorship is a four year position, and towards the end you will, in most cases, be promoted to a senior lecturer or associate professor after an application procedure. Since I have now reached half-time, I think it’s reasonable to summarize what I have done this far and discuss what lies ahead.

Overall, I’m very happy with how the first two years played out when it comes to both research (~80%) and teaching (~20%), even though the pandemic posed some difficult challenges in both areas. I have gotten the opportunity to participate in some very interesting research collaborations. The funded Vinnova project I drafted the application for during the first weeks at the university ended just before summer 2021 and the collaboration that was built with the involved stakeholders was really fruitful. Representatives from both The Swedish Association of the Visually Impaired and The National Agency for Special Needs Education and Schools (SPSM) want to continue the collaborations and we are already looking for new funding opportunities in the area of accessible digital collaborative learning environments. The national and international collaborations in the NordForsk project NORDeHEALTH, which started up formally in January 2021, have also been fruitful and I look forward to another two years of research on personal eHealth services in the Nordic countries. Aside from working in externally funded projects, I also started up some internal collaborations, mostly related to pedagogical research. I will write more about the first two years of research, and the publications published, in my second and third posts about the first half of the assistant professorship.

The teaching has been more of a challenge than I expected when I stared working as an assistant professor two years ago. I know the courses, but being thrown into digital teaching mode made the teaching more difficult than ever before, especially since I have been course responsible for the courses I have been involved in (Interaction design and System development theory). Despite this, the courses worked really well and the students seemed to be happy with them. I will write more about these courses, and the challenges associated with digital teaching and examination, in my fourth and last blog post about the first two years of my assistant professorship.

I really hope, and also believe, that the second half will be just as rewarding as the first one. Hopefully, I will be able to start even more internal research collaborations, especially now when I have made sure that we have two brand new haptic devices at the department – this should open up several new research opportunities within, for example, the areas of digital learning environments and multimodal data exploration and analysis!

DOME · eHealth · Medical Records Online · NORDeHEALTH · NordForsk

Taking part in a new eHealth research project funded by NordForsk

January 1st this year a new research project, NORDeHEALTH, started off. The work on the application for this project started already during the autumn 2019 and the application was submitted to NordForsk in January 2020. In May 2020 we received an email from a NordForsk representative confirming that NORDeHEALTH was among the funded projects! There are quite a lot of Nordic partners involved in this eHealth project. All universities that are currently connected to the DOME consortium (Uppsala University, Örebro University, University of Skövde and Karlstad University) are in the project. There are also partners from Finland (Aalto University), Norway (Norwegian Center for E-health Research), Estonia (Tallinn University of Technology) and USA (Open Notes). You can read about the different project partners, and the researchers representing them, here. Maria Hägglund from Uppsala University is the project leader and she was of course also the main applicant.

The overall aims of the project are the following:

  1. study the current implementation and adoption of Personal eHealth Services (PeHS) in the Nordic countries to create new knowledge and in-depth understanding of challenges and opportunities,
  2. develop evidence-based evaluation frameworks and guidelines to help researchers and practitioners within and beyond the Nordic countries evaluating PeHS and their acceptability, and support successful implementation and adoption of PeHS, and
  3. explore factors around co-design of PeHS through innovation projects focusing on patient-generated data and tools for patients co-creation of the medical record, as well as providing best practice guidelines.

I was one of the co-applicants and I’m also coordinating the work package on “National socio-technical contexts and policies” together with my Örebro University colleague Isabella Scandurra. I’m also the one who is responsible for the work in the Örebro University team on an overall level. Yesterday, I published a blog post on the official NORDeHEALTH webpage about the work that has been performed, and will be performed, related to the work package mentioned above. You can read the post here.

If you find the project interesting, I really recommend you to visit the official web page occasionally and to follow the project blog. The publication list is updated as soon as anything new comes in and the blog is updated quite regularly with posts about ongoing work, publications and events where project partners are involved.

I will of course get back to you later on about NORDeHEALTH on my own blog as well. So stay tuned 🙂