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

Area of Science:

• Rehabilitation Medicine
• Health Informatics
• Patient-Provider Communication

Background:

• Patient-accessible electronic health records, or
• open notes,
• are increasingly common in healthcare.
• Understanding patient and provider perspectives on open notes in rehabilitation is crucial for optimizing their use.
• Acquired brain injury (ABI) populations may have unique needs and experiences with health information access.

Purpose of the Study:

• To investigate the opinions and experiences of patients with a history of acquired brain injury (ABI) and their rehabilitation providers regarding patient-accessible electronic health records (open notes).
• To identify potential discrepancies in perceptions between patients and providers concerning the benefits and drawbacks of open notes in rehabilitation settings.

Main Methods:

• A web-based survey was administered to patients with ABI (N=149 who read notes) and rehabilitation providers (N=390 who had patients read notes).
• Participants responded to multiple-choice, Likert scale, and open-response questions.
• The study focused on experiences and opinions related to open notes within the rehabilitation context.

Main Results:

• Patients with ABI reported positive experiences, viewing open notes as reinforcing care and improving patient-provider connection, with minimal concern about note comprehension.
• Rehabilitation providers expressed ambivalence, with a majority concerned about potential patient misunderstanding or offense from notes.
• Providers also reported increased documentation burden and disagreed that open notes improved patient-provider communication.

Conclusions:

• Significant differences exist between patient and provider perspectives on open rehabilitation notes.
• Further research is needed to develop strategies that enhance the utility of open notes for patient-provider communication.
• Efforts should also focus on mitigating the documentation burden experienced by providers related to open notes.