Open Notes in Brain Injury Rehabilitation Part 1: Contrasting Perspectives of Patients and Providers

Abstract

Objective: To characterize opinions and experiences related to patient-accessible electronic health records in rehabilitation (PAEHR or "open notes") in patients with a history of acquired brain injury (ABI) and rehabilitation providers.

Design: Patients with ABI and rehabilitation providers completed a web-based survey.

Setting: Patients were identified and recruited from medical records in a large Midwestern healthcare system. Providers were recruited through internal listservs within the same healthcare system as well as publicly-available state licensure board email lists.

Participants: 284 patients with ABI and 740 rehabilitation providers participated in the study. Adults with ABI had received rehabilitative care between 2021 and 2024, and rehabilitation providers (physical therapy, occupational therapy, speech-language pathology) were working in settings that utilize EHRs. Primary analyses were conducted with responses from the 149 patients who reported reading at least one rehabilitation note in an EHR and 390 providers who reported that a patient had read one of their notes.

Interventions: Not Applicable.

Main outcome measures: Participants responded to multiple choice, Likert-scale, and open-response questions about their experiences with and opinions about open notes in rehabilitation.

Results: Patients with ABI were enthusiastic about open notes in rehabilitation, with a large majority agreeing that access to open notes reinforces their rehabilitative care and improves their connection to their providers. Patients with ABI were unconcerned about the potential for notes to be confusing, offensive, or upsetting. In contrast, providers were ambivalent about open note access, with a majority expressing concerns that patients might misunderstand or be offended by their notes. Rehabilitation providers also expressed significant burden surrounding clinical documentation and reported that patient access to notes increased this burden, and disagreed that it improved patient-provider communication.

Conclusions: Results suggest significant tensions between patient and provider perspectives surrounding open rehabilitation notes. Future work should examine methods for increasing the utility of open notes in supporting improved patient-provider communication while minimizing provider documentation burden.

Keywords: Brain Injuries; Communication; Electronic Health Records; Patient Preference; Rehabilitation.