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J Gen Intern Med. 2016 Jan;31(1):117-21. doi: 10.1007/s11606-015-3494-0. Epub 2015 Aug 27.

Family Caregivers and Consumer Health Information Technology.

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Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
Division of Clinical Innovation, Geisinger Health System, Danville, PA, USA.
Office of the National Coordinator of Health Information Technology, Washington, DC, USA.


Health information technology has been embraced as a strategy to facilitate patients' access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients' desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.


electronic health records; family caregivers; health information technology

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