Patient Enthusiasm Meets Provider Concern: Conflicting Perspectives on Open Notes in Rehabilitation After Brain Injury 1870

Since passage of the 2021 Cures Act, many electronic medical record notes are open for patients to read. Emerging research suggests that open access to medical records improves patients’ engagement with their care but there are significant challenges in supporting patients’ understanding of notes primarily written for other providers and third-party payers. In this study, we surveyed rehabilitation providers and patients with acquired brain injury (ABI) about their experiences with open notes. Of our 149 patients with ABI, the vast majority (96%) indicated that they liked that their notes were open for them to read and that they benefited from reading rehab notes (91%). A majority of patients believed that they could easily understand their open rehab notes (85%). In contrast, our 390 rehabilitation providers were much more skeptical of open notes, with only 43% indicating that they liked that notes were open for patients to read, and only 35% agreeing that their patients could easily read their open notes. A majority of providers indicated that knowing their notes were open increased their documentation burden (56%), and were concerned that patients would be confused by what they had written (69%) or might be offended by what had been written in their notes (54%). Taken together, results of the surveys suggest some significant disconnects in perspective between patients and providers regarding open notes. Implications will be discussed, along with opportunities for continued research toward improving patient-provider communication.