We have recently published a new paper analyzing data from the Swedish 2016 survey to users of the Swedish patient accessible electronic health record (PAEHR) “Journalen”:
Hägglund M, Scandurra I. Usability of the Swedish Accessible Electronic Health Record: Qualitative Survey Study JMIR Hum Factors 2022;9(2):e37192
A survey study was conducted to elicit opinions and experiences of patients using Journalen. Data were collected from June to October 2016. The questionnaire included a free-text question regarding the usability of the system, and the responses were analyzed using content analysis with a socio-technical framework as guidance when grouping identified usability issues.
2587 users of Journalen completed the survey. Of the 2587 respondents, 186 (7.19%) provided free-text comments on the usability questions. The analysis resulted in 19 categories, which could be grouped under 7 of the 8 dimensions in the socio-technical framework of Sittig and Singh . The most frequently mentioned problems were related to regional access limitations, structure and navigation of the patient portal, and language and understanding.
Although the survey respondents, who were also end users of the PAEHR Journalen, were overall satisfied with its usability , they also experienced important challenges when accessing their records. Some quotes that really resonated with me are;
I would use Journalen more if the whole record was included. The fact that the psychiatric notes are not included makes me feel discriminated and fragmented as a person. Body and mind affect each other and somatic care needs to consider what happens in psychiatry and vice versa.I wish the doctor took the initiative and discussed the information in the record with me. When I’m in the office with the physician my mind goes blank and it’s difficult to talk about everything you’d like to, you realize after, and it feels like the doctor only gets a fragmented view of who you are. To discuss or add to the record could perhaps give us both a more complete picture.
For all patients to be able to reap the benefits of record access, it is essential to understand both the usability challenges they encounter and, more broadly, how policies, regulations, and technical implementation decisions affect the usefulness of record access. The results presented in the paper are specific to the Swedish PAEHR Journalen but also provide important insights into how design and implementation of record access can be improved in any context. We plan to compare these results with the responses from the 2022 NORDeHEALTH survey, and are very excited to report back to you what we find (hopefully some of the problems from 2016 have been removed)!
 Sittig DF, Singh H. A new sociotechnical model for studying health information technology in complex adaptive healthcare systems. Qual Saf Health Care 2010 Oct;19 Suppl 3:i68-i74
 Hägglund M, Scandurra I. User evaluation of the Swedish patient accessible electronic health record: system usability scale. JMIR Hum Factors 2021 Jul 27;8(3):e24927