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Patients can share health records with caregivers using online record access (ORA). This study examined proxy ORA in four European countries, identifying three types and recommending guidance for secure, ethical implementation.

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Area of Science:

  • Health Informatics
  • Digital Health
  • Patient Empowerment

Background:

  • Online record access (ORA) facilitates patient engagement with informal caregivers.
  • European Health Data Space regulations emphasize patient-driven proxy access to health data.

Purpose of the Study:

  • To explore the current state of proxy ORA implementation in Sweden, Norway, Finland, and Estonia.
  • To identify different models of proxy ORA and their characteristics.

Main Methods:

  • Comparative analysis of proxy ORA policies and practices in four European countries.
  • Identification and categorization of existing proxy ORA types.

Main Results:

  • Three types of proxy ORA were identified: full, none, and controlled.
  • Variations in proxy ORA implementation exist across the studied countries.

Conclusions:

  • Guidance is needed for ethically sound and secure proxy ORA.
  • Harmonized proxy ORA implementation is crucial for equitable citizen access across Europe.