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J Am Med Inform Assoc. 2016 Sep;23(5):995-1000. doi: 10.1093/jamia/ocv182. Epub 2016 Mar 16.

Balancing digital information-sharing and patient privacy when engaging families in the intensive care unit.

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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
Armstrong Institute for Patient Safety and Quality, Johns Hopkins School of Medicine and Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA.
University of Utah S.J. Quinney College of Law, Salt Lake City, UT, USA.
Beth Israel Deaconess Medical Center, Boston, MA, USA.
Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
ARDS Foundation, Chicago, IL, USA.
Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD USA Department of Medicine, School of Medicine, Johns Hopkins University, Baltimore, MD USA Department of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA.
San Francisco Medical Center, University of California, San Francisco, CA, USA.
Gordon and Betty Moore Foundation, San Francisco, CA, USA and Department of Medicine, University of California, Los Angeles, CA, USA.


Patients 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.


access; digital information; ethics; intensive care unit; patient engagement; patient privacy; patient-centered care; personal health records; shared decision making

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