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Family Caregivers And Shared Access To The Patient Portal

  • PIs:                 Jennifer Wolff, PhD, Jon Darer
  • Funders:        Atlantic Philanthropies, Geisinger Medical System, Robert Wood Johnson Foundation      
  • Status:           Results Published

Health information technology has been embraced as a strategy to facilitate patients’ access to health information and engagement in care.  However, not all patients are able to access, or 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. Working collaboratively with Geisinger Health System and the Office of the National Coordinator with funding by Atlantic Philanthropies and the Robert Wood Johnson Foundation, we have described challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology.  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.  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.   We have conducted a survey of patients and the “care partners” who share explicit access to the patient portal account at Geisinger Health System to describe the characteristics, circumstances, and online practices of patients and care partners who share access to a patient’s portal account. 

Continuation Of This Project:

Engaging Family Caregivers through Shared Access to the Electronic Health Record, Planning for Transformational Change


Wolff JL, Darer JD, Larsen KL. Family caregivers and consumer health information technology. J Gen Intern Med. 2016;31(1):117–21. doi: 10.1007/s11606-015-3494-0

Wolff JL, Berger A, Clarke D, Green, JA, Stametz R, Yule C, Darer JD. Patients, care partners, and shared access to the patient portal: online practices at an integrated health system. J Am Med Inform Assoc 2016; 23:1150–1158. doi: 10.1093/jamia/ocw025