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Security and Privacy of Online Record Access: A Survey of Adolescents' Views and Experiences in Sweden
Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden.
University of Skövde, School of Informatics. University of Skövde, Informatics Research Environment. (Informationssystem, Information Systems)ORCID iD: 0000-0002-8607-948X
Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden ; Digital Psychiatry, Department of Psychiatry, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, United States.
Department of Information Technology, Uppsala University, Sweden.
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2024 (English)In: Journal of Adolescent Health, ISSN 1054-139X, E-ISSN 1879-1972Article in journal (Refereed) Epub ahead of print
Abstract [en]

Purpose: Ensuring security of online health records and patients' perceptions of security are concerns in adolescent healthcare. Little is known about adolescents' perceptions about healthcare's ability to protect online health records. This article explores adolescents' perspectives on security and privacy of their online health records, potential differences based on gender and health, attitudes to sharing information, and perceptions of what constitutes sensitive information. Methods: This study included a subset of items from a national online patient survey conducted in Sweden (January-February 2022), focusing on respondents aged 15–19 years. Gender and health status differences were calculated using the Kruskal-Wallis test. Results: Of 218 adolescent respondents (77.1% female), a minority had security and privacy concerns. A notable proportion (41.3%) wished to control who could see their records, and those who reported better perceived health were more likely to want to manage access to their electronic health record (H = 13.569, p = .009). Most had not experienced unauthorized access to their records (75.2%) and had never shared health information on other online applications (85.8%). More than half (56.0%) perceived some information as sensitive, where mental health was the most common (76.0%). Most felt that reading their notes improved their trust for their healthcare professional (65.6%) and supported better communication with healthcare professionals (66.5%). Discussion: In this national survey, adolescents generally reported few concerns about patient portals. Findings emphasize the need for security and privacy protection and to empower adolescents with greater control over access to their health information housed in electronic health record systems. 

Place, publisher, year, edition, pages
Elsevier, 2024.
Keywords [en]
Adolescent health, Adolescents, eHealth, Electronic health record (EHR), National survey, Patient portal, Security, Privacy, Patient accessible electronic health record (PAEHR), Usability
National Category
Information Systems Information Systems, Social aspects
Research subject
Information Systems
Identifiers
URN: urn:nbn:se:his:diva-23626DOI: 10.1016/j.jadohealth.2023.12.027PubMedID: 38349307Scopus ID: 2-s2.0-85184824583OAI: oai:DiVA.org:his-23626DiVA, id: diva2:1839972
Note

CC BY 4.0 DEED

© 2024 Society for Adolescent Health and Medicine

Address correspondence to: Josefin Hagström, M.Sc., Department of Women’s and Children’s Health, Uppsala University, Dag Hammarskjölds väg 14B, 752 37, Uppsala, Sweden.

This work was supported by NordForsk through the funding to Nordic eHealth for Patients: Benchmarking and Developing for the Future, NORDeHEALTH [Project #100477]; and the Swedish Research Council for Health, Working Life and Welfare (FORTE) through the funding to Beyond Implementation of eHealth [Project #2020-01229]. C.B. was supported by a Keane Scholar Award.

Available from: 2024-02-22 Created: 2024-02-22 Last updated: 2024-04-15Bibliographically approved

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Åhlfeldt, Rose-MharieRexhepi, Hanife

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