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What do patients consider sensitive health information?: A cross-sectional survey of national patient portal users
Department of Computer Science, Aalto University, Espoo, Finland.
Department of Computer Science, Aalto University, Espoo, Finland.
Department of Women’s and Children’s Health, Participatory eHealth and Health Data Research Group, Uppsala University, Sweden ; Centre for Primary Care and Health Services Research, University of Manchester, United Kingdom.
Department of Women’s and Children’s Health, Participatory eHealth and Health Data Research Group, Uppsala University, Sweden ; Centre for Primary Care and Health Services Research, University of Manchester, United Kingdom.
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2026 (English)In: Digital Health, E-ISSN 2055-2076, Vol. 12Article in journal (Refereed) Published
Abstract [en]

Introduction: Patient-accessible electronic health records (PAEHRs) offer benefits, such as supporting self-management and care engagement. However, some patients, particularly those with mental health conditions, might experience negative emotions such as worry when reading unexpected or sensitive information in their PAEHRs.

Methods: A web-based survey of 4459 respondents distributed via the Finnish national patient portal included multiple-choice and open-ended questions. Respondents consisted of two patient groups who had received care either for 1) mental health or 2) other conditions. Inductive content analysis was performed to explore the kind of information that was perceived as sensitive in the PAEHR. Associations between sociodemographic factors including the type of care and reporting health information as sensitive were calculated via the multivariable binary logistic regression analysis.

Results: Mental health (61.3%), and intimate health (8.3%) were the most frequently mentioned as especially sensitive types of information among respondents, who also stressed that the sensitive nature of the health information depended on the context. Within the mental health information type, therapy or treatment was most often mentioned (3.5%) as sensitive. Respondents who had received mental health care were significantly more likely to perceive certain information as sensitive (53.2%) than other patients (28.8%; Adjusted OR=2.783, 95% CI=[2.333, 3.319], p<0.001).

Conclusions: This study delves into the sensitive character of mental health information within PAEHR. The sensitivity of information also depends on the consequences for the patients when data will be used in another context. Documenting sensitive information carefully and safeguarding it is recommended to maintain trust in electronic health records and healthcare. 

Place, publisher, year, edition, pages
Sage Publications, 2026. Vol. 12
Keywords [en]
eHealth, electronic health records, medical information, mental health, national survey, notes, patient accessible electronic health records, patient portal, sensitive
National Category
Information Systems Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Information Systems
Identifiers
URN: urn:nbn:se:his:diva-26556DOI: 10.1177/20552076261459512ISI: 001788338300001PubMedID: 42282247Scopus ID: 2-s2.0-105041256669OAI: oai:DiVA.org:his-26556DiVA, id: diva2:2074910
Funder
Academy of Finland, 352501Academy of Finland, 352503NordForsk, 100477
Note

CC BY 4.0

© The Author(s) 2026. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).

Correspondence Address: S. Simola; Department of Computer Science, Aalto University, Espoo, Konemiehentie 2, 02150, Finland; email: saija.simola@aalto.fi

This work was supported by the Strategic Research Council at the Academy of Finland [grants 352501 and 352503] and NordForsk [project 100477].

Available from: 2026-06-18 Created: 2026-06-18 Last updated: 2026-07-14Bibliographically approved

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Åhlfeldt, Rose-Mharie

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