Anticipated Benefits and Concerns of Sharing Hospital Outpatient Visit Notes With Patients (Open Notes) in Dutch Hospitals: Mixed Methods Study (Preprint)

Abstract

BACKGROUND The past few years have seen an increase in interest in sharing visit notes with patients. Sharing visit notes with patients is also known as “open notes.” Shared notes are seen as beneficial for patient empowerment and communication, but concerns have also been raised about potential negative effects. Understanding barriers is essential to successful organizational change, but most published studies on the topic come from countries where shared notes are incentivized or legally required. OBJECTIVE We aim to gather opinions about sharing outpatient clinic visit notes from patients and hospital physicians in the Netherlands, where there is currently no policy or incentive plan for shared visit notes. METHODS This multimethodological study was conducted in an academic and a nonacademic hospital in the Netherlands. We conducted a survey of patients and doctors in March-April 2019. In addition to the survey, we conducted think-aloud interviews to gather more insight into the reasons behind participants’ answers. We surveyed 350 physicians and 99 patients, and think-aloud interviews were conducted with an additional 13 physicians and 6 patients. RESULTS Most patients (81/98, 77%) were interested in viewing their visit notes, whereas most physicians (262/345, 75.9%) were opposed to allowing patients to view their visit notes. Most patients (54/90, 60%) expected the notes to be written in layman’s terms, but most physicians (193/321, 60.1%) did not want to change their writing style to make it more understandable for patients. Doctors raised concerns that reading the note would make patients feel confused and anxious, that the patient would not understand the note, and that shared notes would result in more documentation time or losing a way to communicate with colleagues. Interviews also revealed concerns about documenting sensitive topics such as suspected abuse and unlikely but worrisome differential diagnoses. Physicians also raised concerns that documenting worrisome thoughts elsewhere in the record would result in fragmentation of the patient record. Patients were uncertain if they would understand the notes (46/90, 51%) and, in interviews, raised questions about security and privacy. Physicians did anticipate some benefits, such as the patients remembering the visit better, shared decision-making, and keeping patients informed, but 24% (84/350) indicated that they saw no benefit. Patients anticipated that they would remember the visit better, feel more in control, and better understand their health. CONCLUSIONS Dutch patients are interested in shared visit notes, but physicians have many concerns that should be addressed if shared notes are pursued. Physicians’ concerns should be addressed before shared notes are implemented. In hospitals where shared notes are implemented, the effects should be monitored (objectively, if possible) to determine whether the concerns raised by our participants have actualized into problems and whether the anticipated benefits are being realized.