JMIR Publications

ABSTRACT

Background:

While a large number of surveys have been conducted on patients accessing their own health records in recent years, there is a limited number of nationwide cross-country data available on patients’ views and preferences. To address this gap, an international survey of patient users was conducted in the Nordic eHealth project NORDeHEALTH.

Objective:

To investigate the socio-demographic characteristics and experiences of patients who access their electronic health records (EHRs) through the national patient portals in Norway, Sweden, Finland, and Estonia.

Methods:

A cross-sectional web-based survey via national online health portals. Target participants were patients that accessed the national patient portals at the start of 2022, and were aged 15 years and above. The survey included a mixture of close-ended and free-text questions about participant socio-demographics, usability, experiences with healthcare and the EHR, reasons for reading health records online, experience with errors, omissions and offence, opinions about security and privacy, as well as the usefulness of portal functions. Here, we summarised data on participant demographics, past experience with healthcare and the patient portal through descriptive statistics.

Results:

29,334 users completed the survey, of which 9,503 (32.40%) portal users were from Norway, 13,008 (44.35%) from Sweden, 4,713 (16.07%) from Finland and 2,104 (7.17%) from Estonia. National samples were comparable according to reported gender, with two-thirds identifying as women. Age distributions were similar across the countries, but Finland had more older users while Estonia had more younger. The highest attained education and presence of healthcare education varied between the national samples. In all four countries, patients most commonly rated their health as ‘fair’ (38.48%). In Estonia, participants were more often inclined to rate their health positively, while Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, the majority of patients received some care in the last two years (86.55%). Mental healthcare was more common (21.24%) than oncological (12.52%). Overall, the majority of patients had accessed their health record ‘2 to 9 times’ (39.40%), with the most frequent users residing in Sweden, where one-third of patients accessed it ‘more than 20 times’ (35.14%).

Conclusions:

This is the first large-scale international survey to compare patient users’ socio-demographics and experiences with accessing their EHRs. While the countries are in close geographic proximity and demonstrate similar advancements in giving their residents online records access, patient users in this survey differed. We will continue investigating patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined datasets from the NORDeHEALTH 2022 Patient Survey. Clinical Trial: Not applicable.