Empowering Informal Caregivers with Health Information: OpenNotes as a Safety Strategy

Enabling family/friend caregivers with access to visit notes may help avoid errors, delayed diagnoses, or other ambulatory safety risks. Patient, parent, and caregiver perceptions of how shared notes affect safety behaviors and attitudes were studied in an exploratory study.

To assess the impact of OpenNotes on safety, 24,722 patients with active portal accounts and ≥ 1 available visit notes during the prior year at an urban hospital were surveyed between June and September 2016. Surveys were sent to patient portal accounts, and respondents designated themselves as patients or caregivers. Although the hospital does not have formal proxy portal registration, some patients share access with their caregivers.

Of 24,722 portal accounts accessed during the study, 7,058 (28.5%) surveys were returned, with 150 (2.1%) participants identified as caregivers. Among patients who had tests and referrals, reading notes helped caregivers understand the reason for the test (96/120 [80.0%]) or referral (48/52 [92.3%]), remember to get patient tests done (66/120 [55.0%]), check (98/120 [81.7%]) and understand (98/120 [81.7%]) results, and remember patient appointments (36/52 [69.2%]). As a result of reading notes, 54.1% (59/109) of caregivers helping patients on prescription medications reported better assisting patients to take them correctly. Among note-reading caregivers, 53.7% (n =  72/134) trusted the clinician more (44.8% no change), and 58.2% (n =  78/134) reported better teamwork (41.0% no change) as a result of open notes. In total, 30.3% (n =  40/132) reported at least one mistake or possible mistake in the patient's notes. Finding a possible mistake did not negatively affect trust or teamwork.

OpenNotes may enable caregivers with patient health information, answering the call to better support this critical group in the health care system and to engage patients and families in safety efforts.