An invited commentary by Catherine M. DesRoches, DrPHJan Walker, RN, MBATom Delbanco, MD appeared in
Millions of people manage their health and illness with the help of family members and friends. These informal care partners (or caregivers) take responsibility, sometimes at a cost to their own health,1 for a wide variety of tasks, including arranging and attending medical appointments, participating in decision-making, coordinating services, and addressing various patient needs. Despite the vital role played by care partners, particularly in serious advancing illness and at the end of life, they are often unable to access health information in the electronic health record (EHR) that is necessary to coordinate and manage care.2 In this issue of JAMA Internal Medicine, the study by Latulipe et al3 found that only two-thirds of the US hospitals they surveyed offered adult patients the option of granting portal access to a care partner, and among hospitals that did, the process for obtaining proxy credentials was often difficult and time consuming. Moreover, their findings highlight a long-standing practice that has troublesome implications for patient privacy: personnel in almost half of the hospitals suggested to the study’s interviewers (who acted as secret shoppers) that the care partner use the patient’s credentials to review health records.
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