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What do patients consider sensitive health information?: A cross-sectional survey of national patient portal users
Aalto University.ORCID iD: 0000-0003-1819-1119
Aalto University.ORCID iD: 0000-0001-5586-3725
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Participatory eHealth and Health Data Research Group. University of Manchester.ORCID iD: 0000-0003-0908-6173
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Participatory eHealth and Health Data Research Group. University of Manchester.ORCID iD: 0000-0003-2835-0259
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2026 (English)In: Digital Health, E-ISSN 2055-2076, Vol. 12, p. 1-19Article 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, p. 1-19
Keywords [en]
patient portal, mental health, sensitive, medical information, notes, electronic health records, eHealth, national survey, patient accessible electronic health records
National Category
Medical Informatics
Identifiers
URN: urn:nbn:se:uu:diva-588897DOI: 10.1177/20552076261459512ISI: 001788338300001PubMedID: 42282247Scopus ID: 2-s2.0-105041256669OAI: oai:DiVA.org:uu-588897DiVA, id: diva2:2068551
Funder
NordForsk, 100477Available from: 2026-06-09 Created: 2026-06-09 Last updated: 2026-06-25Bibliographically approved

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Kharko, AnnaHagström, JosefinBlease, CharlotteCajander, ÅsaKane, BridgetHägglund, Maria

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Simola, SaijaKujala, SariKharko, AnnaHagström, JosefinBlease, CharlotteCajander, ÅsaÅhlfeldt, Rose-MharieWang, BoKane, BridgetHägglund, Maria
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Participatory eHealth and Health Data Research GroupDivision Vi3Human-Machine Interaction
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