Swedish national PAEHR system called Journalen (or “1177 Vårdguiden” – care guide) is a service that provides patients with access to their health records, reflecting the legal right to read their health records on paper. However, the transition and progression from paper medical records to digital format was not always smooth and resulted in several articles on a different aspect related to it. One of those papers was written by my Swedish colleagues and me (Leysan Nurvalieva) during an Internship at Uppsala University at Human, Technology & Organisation (HTO) research group under the supervision of prof. Åsa Cajander.
Internship in Uppsala was my first academic visiting period. In Trento, where I did my PhD, I was working in the Social Informatics research group, an interdisciplinary team that was spanning across human-computer interaction and software engineering. While digital health was still a topic that was present in our research (in a minor degree though), it was exciting to learn from the e-Health experts, as I have joined the work on the project of the DOME consortium. More specifically, I was leading an interdisciplinary team with members from the University of Trento, Uppsala University, and University of Skövde (another new experience for me) working on the analysis of a national survey on the “Journalen”. The survey covered patients’ views on sharing their health information with others – online using the system or offline. The survey was available via Journalen login page for five months and resulted in 2,587 responses out of the 423,141 who logged in during that period. To elaborate survey results, we combined them with the interviews with patients who had cancer in different stages and were the users of Journalen as well. This collaboration resulted in a Health Informatics Journal publication, which influenced my academic interests a lot. Next, I describe the insights I have got from this work and where they led me in my further studies.
The study revealed that participants trust the system and treatment of their medical information in it, they feel safe using Journalen. There could be many reasons for that, including Swedish culture, but also the fact that patients might not be aware of online sharing risks or have related misconceptions, which we observed in other studies. Interestingly, we found that patients who do not trust the system still share their health records, which points to the privacy paradox – the discrepancy between an individuals’ privacy attitudes and their actual online behaviour.
Until the summer of 2018, patients could share their health records in Journalen with any person in Sweden by adding the social security number of the person to share with, and choose what parts of the medical records they would like to share. This possibility was later removed due to GDPR, but the study was carried out while the sharing function was still in use. The study clearly indicates the patients’ need to share their health records – online or offline – for various reasons: to receive support or clarifications, to delegate decision-making in certain situations, or to have the feeling of connectedness. However, the open question remains open, such as “would removing the sharing functionality prevent actual sharing?” Are there are risks of sharing becoming less secure or controlled?”
The study clearly shows that there is a need for transparency in sharing and delegating one’s health-related information: both for patients and healthcare providers. Patients’ privacy of systems like Journalen should be considered in the design process following the “data protection by design and by default” requirement of GDPR and related “Privacy by Design” (PbD) principles, which advocate that privacy requirements be taken into consideration from the very beginning of product design and development.
Coming back to the research experience I have gained from this project, I highly appreciate a chance to learn a work style of the HTO research group. I noticed some interesting work practices that I am trying to replicate in my work and collaborations. For instance, I appreciate the way Åsa and her colleagues make their work transparent to the public by participating in the interviews and writing in their blog. Another good practice I like to distribute is sharing not only success stories but also things that did not go as planned (or “unsuccess stories”), which encourages brainstorming of the alternative action strategies but also makes already too competitive and accomplishment-driven academic world healthier and more mindful.
Reference to the paper at the Health Informatics Journal – “I do not share it with others. No, it’s for me, it’s my care”: On sharing of patient accessible electronic health records
This blog post also appeared at Leysan Nurgalieva’s blog found here: https://www.leysannurgalieva.com/academic-blog/patient-portal-journalen
- New Publication: “I do not share it with others. No, it’s for me, it’s my care”: On sharing of patient accessible electronic health records - April 15, 2020
- Internship at the HTO research group: Reflections and the impact - December 18, 2019
- Visiting period at the HTO: Leysan Nurgalieva - September 4, 2017