Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden (Preprint)

Abstract

Background: In 2012, Region Uppsala was the first county council in Sweden to introduce patient accessible electronic health records (PAEHRs). By summer 2016 all but four out of 21 county councils had given citizens the possibility to access their medical information online. Numerous studies on the effect of PAEHRs on the work environment of healthcare professionals have been carried out, but up until now no extensive studies have been carried out regarding the patient's experiences with using PAEHRs. Objective: The aim of the study was to investigate patients' experiences of accessing their online electronic health records through the Swedish national patient portal. In this paper, the focus is on describing user characteristics, usage, and attitudes towards the system. Methods: A national patient survey was designed, based on an earlier interview and survey studies with patients and healthcare professionals. Data was collected during a five months period, June-October 2016. The survey was made available online on the login page to the patient accessible electronic health record system (Journalen) in Sweden. Patients from all county councils in Sweden could reach the survey. Results: 2587 users answered the survey. Two participants were excluded from the analysis, since they had only received care in a county council which did not yet show any information in Journalen. The results show that the majority of the users are women (67%) and there is a clear indication that a large amount of the users work or have worked within healthcare. Most users use Journalen infrequently (72%) and the main reason for use is to get an overview of one's health status. Furthermore, lab results was shown to be the most important type of information to have access to. The majority of the respondents (69%) want access to new information within a day. A vast majority of the users are positive towards Journalen; 87% strongly agree and 8% agree to the statement "Getting access to Journalen is good for me". Conclusions:The respondents provide several important reasons for why they use Journalen and why it is important for them to be able to access information in this way -several relate to patient empowerment, involvement, and security. Also considering the overall positive attitude, we can conclude that Journalen -and most probably other similar systems as well -fill important needs for patients. It is clear that patients appreciate the possibilities that Journalen gives.