As I wrote in this blog post, a conference paper that was submitted to and presented at the The International Symposium for Health Information Management Research (ISHIMR 2020) was selected for publication in Health Informatics Journal. The journal version was recently published with the open access option and is available here! The title of the publication is “Do you want to receive bad news through your patient accessible electronic health record? A national survey on receiving bad news in an era of digital health”. My colleague Hanife Rexhepi from University of Skövde is the main author and the co-authors are, aside from me, Isto Huvila from Uppsala University and Rose-Mharie Åhlfeldt from University of Skövde. All of us are members of the DOME consortium and the NORDeHEALTH project.
The study presented in the article focuses on results from two questions in a large Swedish patient survey on patients’ attitudes towards and experiences with the patient accessible electronic health record service Journalen. The questions in focus were: “How do you receive bad news about your health from your health care provider?” and “How would you want to receive bad news about your health?” The response options were (short versions): “Phone”, “During visit”, “Physical letter”, “Journalen”, “Other”. The results were quite interesting, especially when it comes to the proportion of patients who received bad news by reading about them in Journalen (~2.0%) compared with the proportion of patients who want to receive bad news by reading about them in Journalen (~17.7%). There is a big difference here, even though the majority still wants to receive bad news via phone or during a visit. It is important to note here that patients who get notified about bad health news through Journalen have not yet discussed the results with e.g. a physician.
Even though healthcare professionals generally have a more positive attitude towards Journalen nowadays, physicians, especially within oncology, worry about patients finding out about bad health news on their own through this e-service. This is interesting to relate to the findings from the newly published study. We are definitely living in an era of digital health, and maybe this has changed, and will continue to change, how we want to receive bad news about our health.
Earlier today, a Swedish news article as well as a press release about the study was published by Örebro University. You can find the news article here.
I also want to mention the following article that was published in the same special issue in Health Informatics Journal (Hanife is first author even on this one, and Isto and Rose-Mharie co-authors!):
- Rexhepi, H., Huvila, I., Åhlfeldt, R. M., & Cajander, Å. (2021). Cancer patients’ information seeking behavior related to online electronic healthcare records. Health Informatics Journal, 27(3), 14604582211024708.
Here is the abstract of our newly published study:
Despite the fact that patient accessible electronic health records (PAEHRs) have been around for many years in several countries, there is a lack of research investigating patient’s preferences for receiving bad news, including through PAEHRs. Little is also known about the characteristics of the patients who prefer to receive bad news through the PAEHR in terms of, for example medical diagnosis, age and educational level. This study, based on a national patient survey in Sweden (N = 2587), investigated this. Results show that, generally, receiving bad news by reading in the PAEHR is still among the least preferred options. Additionally, a higher proportion of men want to receive bad news in the PAEHR compared to women (p = 0.001), and the same goes for those who are not working/have worked in healthcare (p = 0.007). An effect of disease groups was also found, showing that diabetes patients in particular, want to receive bad news through the PAEHR.