The Open Notes Initiative: Both Patients and Doctors Benefit

Have you ever wondered what your doctor is scribbling down while you are talking about all of your symptoms? Well, the “open notes” initiative wants you to be able to see those notes. It’s the idea that patients should have easy access to view the visit notes written by their doctors, nurses or other healthcare providers. This concept of patient access to medical records is at the center of participatory medicine.

Research about open notes was funded by the Robert Wood Johnson Foundation, and the results were just published in the Annals of Internal Medicine, “Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead.” The entire article can be read for free online.

For many rare disease patients who carry binders of their medical records from physician to physician, advocating for access has been the norm. But this niche behavior is becoming more widely accepted and, as this data shows, even welcomed by physicians.

What did physicians think?
The physician response is summed up by this quote from a participating doctor, “My fears: Longer notes, more questions and messages from patients. In reality, it was not a big deal.”

• Few doctors reported significant impacts on workflow: only 0%-5% reported longer patient visits and 0%-21% reported taking more time writing notes. Although 17%-26% of doctors reported that they would prefer not to continue using open notes, when offered the chance to stop, none did.
• A substantial minority of doctors reported changing their documentation. While the study did not examine individual notes, 3%-36% of participating doctors reported changing the way they wrote about mental health, substance abuse, cancer and obesity.
• Overall, the study found, “Many doctors described strengthened relationships with their patients. They cited enhanced trust, transparency, communication, and shared decision making.”

What did patients think?
“Patients are enthusiastic about open access to their primary care doctors’ notes. More than 85% read them, and 99% of those completing surveys recommended that this transparency continue,” said Tom Delbanco, MD, co-first author, in the press release.

• Patients reported important benefits: 77%-85% reported better understanding of their health and medical conditions. While 77%-87% felt more in control of their care, 70%-72% said they took better care of themselves.
• Pharmaceutical marketers take note: 60%-78% reported doing better with taking their medications.
• Patients were not overwhelmed by the notes, with only 1%-8% reporting being confused, worried or offended by what they read.

Open notes could become a key differentiator for physician practices, since 85%-89% of patients said the availability of open notes would influence their future choices of doctors and health plans. One hundred five primary care physicians and 13,564 of their patients (who had at least one note available) took part during the yearlong voluntary program at three locations.

A turning point
Susan S. Woods, MD, MPH, blogged about these results: “We’ll look back on this day as a historic turning point in the transparency of medical records, moving toward fully sharing notes with patients.” Dr. Woods has been working on open notes at the Veterans Health Administration, and her research supports these findings. You can also read what e-Patient Dave deBronkart thinks of the research, including his personal experience with reading his medical records. Would you like to see your doctor’s notes? Physicians, would you be willing to let your patients see their notes?