As I wrote in an earlier blog post, two papers on which I was a co-author were presented in parallel sessions during the first day of the Medical Informatics Europe (MIE) conference. Luckily, Åsa Cajander and I managed to switch rooms, after our presentation, before Maria Hägglund started hers. Maria’s presentation of the paper “Timing It Right – Patients’ Online Access to Their Record Notes in Sweden” was also about work performed within the DOME consortium, but it focused more on the patient accessible electronic health records system (Journalen) as such and on when new information is presented for the patients to see.
Maria started off by giving a thorough overview of Journalen as well as the national patient portal where patients e.g. can, apart from logging in to Journalen, contact care providers electronically, book times and check as well as renew medication prescriptions. As can be seen in the blog picture above, Sweden’s independent regions are responsible for healthcare and as a consequence there are some differences regarding e.g. which health record systems are used and what policies are followed when it comes to information presented in Journalen.
After introducing Journalen and the national patient portal, Maria continued by discussing the Swedish National Regulatory Framework and especially the part concerning when patients get access to new information (e.g. lab results or visit notes). The big issue here is that each independent region or healthcare provider can make a choice (electable paragraphs) if they want to give patients immediate access to new information or not. The alternative is to use a two weeks delay. The different providers and regions can also choose whether or not patients get access to unsigned notes/results. The obvious consequence of the electable paragraphs is differences between different county councils, regarding when patients get access to information in Journalen.
Towards the end, Maria also revealed what the patients say about waiting times. Results from the national patient survey show that the majority of patients want to see new information in Journalen within a day and only about 20% think that a two week waiting period would be ok. This is interesting to relate to the fact that the majority of the county councils have chosen to use a delay period of two weeks for unsigned notes (in the survey, the patients were informed about that new information presented in Journalen within a day will most probably not yet be signed by a physician, but they still wanted quick access).
If you want to know more about this study, you can find the open access full paper here.