Privacy and Security

Benefits Outweigh Downside When Giving Cancer Patients Access to Doctors’ Notes

The movement to give patients electronic access to doctors’ notes continues to gain momentum, as additional studies garner positive feedback from participating patients.

A recent study published in Practical Radiation Oncology provided patients with materials that instructed them on how to access oncology notes at the time of their initial evaluation. Patients were surveyed to evaluate baseline interest and expectations prior to access, and to determine actual usage of access and the impact of that access once the radiation treatment course had ended.

Of the 220 patients surveyed, 62 percent completed the baseline survey, and 40 percent of those who completed the baseline survey completed the final survey. Nearly all the patients who completed the baseline survey (99 percent) said that they believed having open access to oncology notes would have positive outcomes:

  • 99 percent reported they expected access to improve understanding of diagnosis
  • 98 percent reported they expected access to improve understanding of treatment side effects
  • 96 percent reported they expected access to provide reassurance about treatment goals
The study authors reported that all patients who accessed notes found them to be useful, with the following specific measures:
  • 96 percent reported an improved understanding of their diagnosis
  • 94 percent reported an improved understanding of treatment side effects
  • 96 percent reported feeling more reassured about their treatment
Not all feedback was positive, however:
  • 11 percent reported increased worry
  • Six percent reported increased confusion
  • Four percent reported finding information they now regret reading
The authors concluded there is a strong interest among radiation oncology patients in open access to doctors’ notes, and that the study’s results “support strategies to allow more cancer patients access to their notes.”

 

Sarah Sheber is assistant editor/web editor at Journal of AHIMA.

Tags: patient access, health data