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

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.