Impact of Open Access to Physician Notes on Radiation Oncology Patients: Results from an Exploratory Survey

Purpose: There is an increasing effort to allow patients open access to their physician notes through electronic medical record portals. However, limited data exist on the impact of such access on oncology patients, and concerns remain regarding potential harms. Therefore, we determined the baseline perceptions and impact of open access to oncology notes on radiation oncology patients. Methods and materials: Patients receiving radiation therapy were provided instructional materials on accessing oncology notes at the time of their initial evaluation. Patients were prospectively surveyed to evaluate baseline interest and expectations before access and to determine the actual usage and impact at the end of their radiation treatment course. Results: A total of 220 patients were surveyed; 136 (62%) completed the baseline survey, of which 88 (40%) completed the final survey. The majority of participants were age >60 years (n = 83; 61%), and 70 were male (51%). Before accessing the notes, the majority of patients agreed that open access to oncology notes would improve understanding of diagnosis (99%), understanding of treatment side effects (98%), reassurance about treatment goals (96%), and communication with family (99%). All patients who accessed the notes found them to be useful. After accessing the notes, approximately 96%, 94%, and 96% of patients reported an improved understanding of their diagnosis, an improved understanding of treatment side effects, and feeling more reassured about their treatment, respectively. Approximately 11%, 6%, and 4% of patients noted increased worry, increased confusion, and finding information they now regret reading, respectively. Patient age, sex, and specific cancer diagnoses were not predictive of experiencing negative effects from accessing the notes. Conclusions: Radiation oncology patients have a strong interest in open access to their physician notes, and the majority of patients expect and actually report meaningful benefits. These data support strategies to allow more patients with cancer access to their physicians’ notes.