Background: There has been limited research into the experiences of primary care physicians (PCPs) and patients when patients are given the opportunity to review their doctors’ office notes.
Objective: This study aimed to assess the effects on both doctors and patients of providing patients with access to their visit notes through secure online portals.
Design: A quasi-experimental study was conducted involving PCPs and patient volunteers over a year-long period. Patients were given electronic links to access their doctors’ notes.
Setting: The research took place in primary care practices at three locations: Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington.
Participants: The study included 105 PCPs and 13,564 of their patients who had at least one completed doctor’s note available during the study period.
Measurements: The study tracked patient portal usage, electronic messaging, and gathered survey data on participant perceptions regarding behaviors, benefits, and potential negative consequences.
Results: A significant majority of patients, 11,155 out of 13,564, accessed their Doctor Notes at least once (84% at BIDMC, 82% at GHS, and 47% at HMC). Among the 5,219 patients who accessed their notes and completed post-study surveys, a large percentage (59% to 77% across sites) reported feeling more in control of their healthcare due to open access to doctor notes. For patients taking medication, 60% to 78% reported improved medication adherence. Some concerns were noted, with 26% to 36% of patients expressing privacy worries, and a small fraction (1% to 8%) reporting confusion, worry, or offense caused by the notes. Additionally, 20% to 42% of patients shared their doctor notes with others.
Interestingly, the volume of electronic messages from patients remained unchanged. Post-intervention, very few doctors reported longer patient visits (0% to 5%) or increased time spent addressing patient questions outside of appointments (0% to 8%). Practice size had minimal impact on these findings. A range of doctors (3% to 36%) reported changes in their documentation content, and 0% to 21% indicated spending more time writing notes.
Looking to the future, a substantial proportion of patients (59% to 62%) expressed the desire to add comments to their doctor’s notes. While one in three patients felt they should approve the content of the notes, the vast majority of doctors (85% to 96%) disagreed with this notion. Crucially, at the conclusion of the study, 99% of patients wanted open access to doctor notes to continue, and none of the participating doctors chose to discontinue the practice.
Limitations: The study’s geographic representation was limited to three areas, and most participants had prior experience using patient portals. The voluntary nature of doctor participation and patient portal/survey usage may introduce bias towards favorable feedback. Furthermore, the patient survey response rate of 41% may limit the generalizability of the findings.
Conclusion: The study demonstrates that patients frequently access their visit notes, and a large majority report substantial clinical benefits and minimal concerns. Virtually all patients desired the continuation of open doctor notes. Given the minimal impact on doctors’ workloads, the findings suggest that providing open access to doctor notes is a valuable practice deserving of widespread implementation.
Primary funding source: The Robert Wood Johnson Foundation, the Drane Family Fund, the Richard and Florence Koplow Charitable Foundation, and the National Cancer Institute.
