Evolving Perspectives on Patient-Accessible Electronic Health Records in Sweden: Comparative Survey Study
Journal of Medical Internet Research ·
Background: Patient-accessible electronic health records (PAEHRs) aim to enhance patient engagement by providing access to clinical information. In Sweden, implementation of a national PAEHR began in 2012 and reached nationwide scale-up in 2018. Adoption and use have steadily increased over time. So far, few studies report on how perspectives on PAEHRs evolve, informing on long-term use and development of the services. Objective: Data were compared from 2 national patient surveys conducted in Sweden (in 2016 and 2022) regarding patients’ experiences and usage of PAEHRs. The aim is to explore and understand possible changes in patients’ reasons for use and perceived value of the different information types and functions provided. Methods: The 2016 survey included responses from 2587 respondents, while the 2022 survey included 13,008 respondents. In 2016, the proportion of respondents who identified as women was 66.8% (1629/2437) and 67.3% (8753/13,008) in 2022. The largest age groups in 2016 were 55‐64 years and 65‐74 years in 2022. The surveys collected data on patients’ experiences with PAEHRs, including demographic information, reasons for using, and perceived impacts on communication with health care professionals. Users who logged in to the PAEHR during the survey periods were invited to participate in the respective survey through a link on the login page. Results: Chi-square tests (<.05) were used to check for differences in responses between the 2 surveys. Due to the large difference in the number of respondents between the 2 surveys, the effect sizes are fairly small, ranging from 0.02 to 0.19. Key findings indicate an increase in the positive perception of PAEHRs over the past 6 years. In 2022, 72.3% of respondents reported that PAEHRs supported communication with health care professionals, compared with 60.0% in 2016 (<.001). The primary reason for using PAEHRs shifted from general interest in 2016 to preparing for health care visits in 2022. There was also an increase in patients valuing access to their lab test results, from 95.0% in 2016 to 97.8% in 2022 (<.001; Cramer V=0.06). Conclusions: The study demonstrates that the overall highly positive patient attitude towards and usage of PAEHRs in 2016 persisted and was strengthened in 2022. The findings point to the growing importance of PAEHRs in enhancing patient engagement and communication with health care professionals, and to the acceptance and promotion of PAEHR within the Swedish health care system. This research provides valuable insights into the evolving landscape of PAEHR and its impact on patient-centered care. Increased use of PAEHRs may suggest that such systems can support better-informed patients, improve transparency in health care, and facilitate patient participation in care. The results can guide future policies and the development of PAEHR worldwide.