What do patients consider sensitive health information? A cross-sectional survey of national patient portal users - Report - MDSpire

What do patients consider sensitive health information? A cross-sectional survey of national patient portal users

  • By

  • Saija Simola

  • Sari Kujala

  • Anna Kharko

  • Josefin Hagström

  • Charlotte Blease

  • Åsa Cajander

  • Rose-Mharie Åhlfeldt

  • Bo Wang

  • Bridget Kane

  • Maria Hägglund

  • June 9, 2026

  • 0 min

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Patients' Perspectives on Sensitive Health Information: Insights from a National Survey

Overview

This study explores patients' perceptions of sensitive health information within patient-accessible electronic health records (PAEHRs), highlighting concerns regarding privacy, particularly related to mental health information.

Background

The accessibility of electronic health records through patient portals has been linked to improved communication and patient engagement in healthcare. However, concerns about privacy and the sensitivity of certain health information, especially mental health data, can deter patients from utilizing these resources.

Data Highlights

No numerical data was provided in the source material.

Key Findings

  • Patients desire access to their electronic health records despite concerns about sensitive information.
  • Access to mental health information is often perceived as particularly sensitive by patients.
  • Concerns about privacy and unwanted access can affect patients' willingness to engage with their health records.
  • Healthcare professionals share concerns about the potential negative emotional impact on patients from accessing sensitive notes.
  • Proxy access to sensitive health information raises ethical concerns, particularly for adolescents and their parents.

Clinical Implications

Healthcare providers should be aware of the varying perceptions of sensitive health information among patients.

Conclusion

Recognizing patients' perspectives on sensitive health information is important for improving the design and functionality of patient portals.

Related Resources & Content

  1. Simola et al., Journal of Medical Internet Research, 2026 -- What do patients consider sensitive health information? A cross-sectional survey of national patient portal users
  2. Journal of Medical Internet Research (JMIR) — Patient-Reported Experiences With Viewing and Understanding Test Results in Patient Portals: Cross-Sectional Survey Analysis
  3. Journal of Medical Internet Research (JMIR) — Patient Experiences With Online Laboratory Test Presentations From Access to Activation: Systematic Review
  4. Journal of Medical Internet Research (JMIR) — Understanding Patient-Reported Offenses in Electronic Health Records: Cross-Sectional Mixed Methods Survey
  5. Journal of Medical Internet Research (JMIR) — Physicians’ Perceptions and Demand Regarding Clinical and Secondary Use of Patient-Generated Health Data: Cross-Sectional Survey
  6. Information Blocking - ONC - Office of the National Coordinator for Health Information Technology
  7. What do patients consider sensitive health information? A cross-sectional survey of national patient portal users - Saija Simola, Sari Kujala, Anna Kharko, Josefin Hagström, Charlotte Blease, Åsa Cajander, Rose-Mharie Åhlfeldt, Bo Wang, Bridget Kane, Maria Hägglund, 2026

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