Adolescents’ Experiences and Opinions of Web-Based Access to Electronic Health Records: A National Patient Survey in Sweden (Preprint)

Abstract

BACKGROUND If, how, and when to provide adolescents with access to their electronic health records (EHRs) online is a debated question. However, few studies have investigated adolescents’ experiences of using patient portals, and the lack of guidance has led to vast variety in approaches adopted by EHR vendors and healthcare providers worldwide. A national survey conducted within the Nordic eHealth project NORDeHEALTH provided an important opportunity to advance our understanding of adolescent users of patient portals. OBJECTIVE The aim of the study is to explore the experiences and opinions of adolescents’ patient portal users. Specifically, to investigate use frequency, encouragement to read, reasons for reading health records online, perceived effect on trust and communication with healthcare professionals (HCPs) with respect to online record access (ORA), and perceived usefulness of information and functions in a patient portal. METHODS Using a convenience survey available through the Swedish online health portal, data were collected during three weeks in January and February 2022. The survey was designed to explore patients’ experiences using the national patient portal and included 83 items. This study focused on a subset of close-ended and free-text questions related to the aforementioned topics, and included only respondents aged 15-19. Demographic factors and frequencies on Likert style questions were reported with descriptive statistics, while Kruskal-Wallis Tests were used for group comparisons. RESULTS Of 13 008 users who completed the survey, 218 (1.68%) were unique users aged 15-19 (females: 77.1%). One fifth (47/218, 21.6%) had been encouraged by HCPs to read their records, and only those encouraged by doctors reported significantly higher use frequency (P=.003). All types of information were rated high on usefulness, while some functions were rated low, such as being able to block specific clinical notes from HCPs and managing services for family members. The main reason for reading their health records online was out of curiosity, and most felt that reading their notes improved their trust for their HCP (143/218, 65.6%), and that it supported better communication with HCPs (145/218, 66.5%). Almost no gender differences were identified. CONCLUSIONS Adolescents who read their records online perceive it to be useful and that it improves their trust in and communication with their HCPs. Encouragement by HCPs can lead to increased use of patient portals among adolescents, and particularly doctors’ and nurses’ encouragement need further investigation. Findings should be considered in the future design of patient portals for adolescents. CLINICALTRIAL Approval from the Ethical Review Authority in Sweden (#2021-05229).