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Evaluating the Balance Between Privacy and Access in Digital Information Sharing.

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Most patients want to share their intensive care unit (ICU) medical information with a chosen family member. This desire for information sharing can improve engagement and reduce psychological distress for those involved in patient care.

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Area of Science:

  • Medical Informatics
  • Patient Engagement
  • Health Psychology

Background:

  • Access to personal health records in the Intensive Care Unit (ICU) can enhance patient engagement.
  • Sharing health information may mitigate negative psychological effects of ICU stays.
  • Little is known about patient preferences for information sharing with family in the ICU.

Purpose of the Study:

  • To understand information-sharing preferences of former ICU patients and their family members.
  • To identify predictors of these information-sharing preferences.

Main Methods:

  • An internet survey was developed by a multidisciplinary team.
  • The survey underwent formal pilot testing before administration.
  • Panel sampling ensured an ethnically representative U.S. adult sample with prior ICU experience (patient or family).

Main Results:

  • 93.6% of respondents desired to share their medical history (all or ICU-related) with a designated family member.
  • 79% wanted their family member to access this information remotely via a home computer.
  • Information-sharing preferences were consistent across demographic groups and prior ICU experience.

Conclusions:

  • Sharing personal health information with a designated family member during an ICU admission is highly desired by most patients and their families.
  • Healthcare policies and regulations should consider these patient preferences for information access.