• Samuel M Brown, Hanan J Aboumatar, Leslie Francis, John Halamka, Ronen Rozenblum, Eileen Rubin, Sarnoff Lee Barbara B Beth Israel Deaconess Medical Center, Boston, MA, USA., Jeremy Sugarman, Kathleen Turner, Micah Vorwaller, Dominick L Frosch, and Privacy, Access, and Engagement Task Force of the Libretto Consortium of the Gordon and Betty Moore Foundation.
• Center for Humanizing Critical Care, Intermountain Healthcare, 5121 S. Cottonwood St, Murray, UT USA and Pulmonary and Critical Care Medicine, University of Utah, Salt Lake City, UT, USA samuel.brown@imail.org.
• J Am Med Inform Assoc. 2016 Sep 1; 23 (5): 995-1000.

AbstractPatients in intensive care units (ICUs) may lack decisional capacity and may depend on proxy decision makers (PDMs) to make medical decisions on their behalf. High-quality information-sharing with PDMs, including through such means as health information technology, could improve communication and decision making and could potentially minimize the psychological consequences of an ICU stay for both patients and their family members. However, alongside these anticipated benefits of information-sharing are risks of unwanted disclosure of sensitive information. Approaches to identifying the optimal balance between access to digital health information to facilitate engagement and protecting patient privacy are urgently needed. We identified eight themes that should be considered in balancing health information access and patient privacy: 1) potential benefits to patients from PDM data access; 2) potential harms to patients from such access; 3) the moral status of families within the patient-clinician relationship; 4) the scope of relevant information provided to PDMs; 5) issues around defining PDMs' authority; 6) methods for eliciting and documenting patient preferences about their family's information access; 7) the relevance of methods for ascertaining the identity of PDMs; and 8) the obligations of hospitals to prevent privacy breaches by PDMs. We conclude that PDMs should typically have access to health information from the current episode of care when the patient is decisionally impaired, unless the patient has previously expressed a clear preference that PDMs not have such access.© The Author 2016. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

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