Usability of the Swedish Accessible Electronic Health Record: Qualitative Survey Study

Abstract

Background Patient portals are increasingly being implemented worldwide to ensure that patients have timely access to their health data, including patients’ access to their electronic health records. In Sweden, the e-service Journalen is a national patient-accessible electronic health record (PAEHR), accessible on the web through the national patient portal. User characteristics and perceived benefits of using a PAEHR will influence behavioral intentions to use and adoption; however, poor usability, which increases effort expectancy, may have a negative impact. Therefore, it is of interest to further explore how users of the PAEHR Journalen perceive its usability and usefulness. Objective On the basis of the analysis of the survey respondents’ experiences of the usability of the Swedish PAEHR, this study aimed to identify specific usability problems that may need to be addressed in the future. Methods 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 sociotechnical framework as guidance when grouping identified usability issues. Results During the survey period, 423,141 users logged into Journalen, of whom 2587 (0.61%) completed the survey (unique users who logged in; response rate 0.61%). 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 sociotechnical 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. Conclusions 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. 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 here 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.

Patients’ Experiences of a National Patient Portal and Its Usability: Cross-Sectional Survey Study (Preprint)

“…The respondents also mentioned similar usability challenges as in earlier research, such as difficulties with navigation [16][17][18]38,56] and concerns with data privacy and security [23,38]. The inability to print out information was found in earlier research that used surveys that included open-ended answers [22].…”

Patient empowerment through online access to health records

“…Studies have found that limitations in information access are a common cause of frustration for users of patient portals. 4 37 …”

“…Transitioning to record access by default might lead to an increase in workload for clinicians in the short term but is likely to reduce workload in the longer term and make access more uniform and useful for patients. Studies have found that limitations in information access are a common cause of frustration for users of patient portals 437…”

Reasons for Acceptance or Rejection of Online Record Access Among Patients Affected by a Severe Mental Illness: Mixed Methods Study

“…Studies conducted in mental health generally yield similar results to those in general health settings, but they also highlight distinct ethical and practical challenges [ 13 , 14 ]. For example, these challenges encompass navigating disagreements between patients and health care professionals (HCPs) regarding clinical notes, as well as discussing exceptions to or limitations of access for patient groups with specific diagnoses or acute conditions, such as severe mental illnesses (SMI) [ 15 , 16 ]. SMI is commonly characterized by conditions including (1) nonorganic psychoses, bipolar disorders, personality disorders, or severe chronic depression; (2) a prolonged psychiatric history involving multiple hospitalizations or outpatient treatments; or (3) moderate impairment in work and leisure activities alongside mild impairment in basic needs [ 17 ].…”