Do you ever wonder what your doctor is typing into your medical record while you’re explaining your symptoms, trying to figure out when you had your last period or guesstimating how many drinks you have each week?
It turns out, reading these notes can not only help you stop wondering what your doctor was thinking during your appointment—it may also improve your health. That’s the idea behind OpenNotes, an international movement working to make healthcare more transparent by urging providers to share their visit notes with patients.
“The most underutilized resource in American medicine is the patients themselves,” says Joann Elmore, M.D., M.P.H., affiliate professor of medicine at University of Washington School of Medicine and an investigator for OpenNotes. “No one cares about or knows more about patients than the patients themselves.”
In 2010, OpenNotes launched its first study with patients at Harborview Medical Center in Seattle, Beth Israel Deaconess Medical Center in Boston, and Geisinger Health System in Pennyslvania. The results? Patients really liked it, and the practice took off.
Today, more than 20 million people across the country have online access to their notes. In fact, you could be one of them and not even realize it. Wondering why this matters or how you can find out what your doctor is writing about you? Here’s what you should know.
Reading notes can give you more control over your care
It’s hard enough to remember what you and your provider talked about while you're driving home from an appointment, let alone weeks later. But having access to your visit notes keeps this information at your fingertips whenever you may need it, says Elmore.
“Patients have said on surveys that it increases trust, increases their understanding of their own health and improves their adherence to medications,” says Elmore.
This could be especially beneficial for people managing chronic conditions. If you’re living with a chronic illness, keeping track of your symptoms and medications can be complex and overwhelming. Having the ability to recall what you talked about with your doctor can make it easier to manage your illness.
Plus, when clinicians know that you can read what they’re writing, they’re more apt to be clear, concise and thoughtful in their note-taking, says Elmore. This does require a learning curve—and OpenNotes has developed learning tools to help providers improve their communication skills. A little more work for providers means you get to reap the benefits as a patient, says Elmore.
It could lead to fewer medical errors
Medical errors are the third leading cause of death in the U.S., according to a startling study published in 2016. And adverse drug events, which is harm experienced by a patient as a result of exposure to a medication, account for nearly 700,000 emergency department visits and 100,000 hospitalizations each year, according to the Agency for Healthcare Research and Quality.
Patients can potentially help stop some of this by providing an extra set of eyes—and they’re the ones who know their own bodies best, says Elmore. An April 2017 OpenNotes study she worked on found that about a third of the 4,592 patients who had access to their notes and were surveyed reviewed them for accuracy. Of these, 29 percent spoke up about a perceived error in their notes.
“Medication errors and medical errors are infrequent at UW Medicine, but I’d like to prevent them, and I think we can get patients’ help,” says Elmore. “For example, patients know if it’s their left leg or their right leg that has a rash. They know what pills they’re actually swallowing at home.”
How to access your notes—and maybe even write your own
Chances are the place where you go for medical care provides access to an online patient portal where you can send messages to your providers, access your medical records, and maybe even schedule appointments and pay your bills. This is where you’d go to read your notes.
If you’re one of the thousands of patients in the UW Medicine system, you can access notes from your visits by logging into your eCare patient portal, clicking over the “visits” tab, and selecting the notes option.
Soon, you may even be able to add to the notes with your doctor during your appointment.
In an OpenNotes pilot study published in March 2017, Elmore and Mchale Anderson, a medical student from UW School of Medicine, sought to see if allowing patients to type their agenda into their notes before a visit would make it easier for them to communicate their health concerns.
Researchers asked patients they had recruited at the Harborview Adult Medicine Clinic to arrive a few minutes before their appointment time. They provided the participants with a laptop to type what they wanted to discuss with their provider in their electronic medical record. The notes were stored and could be viewed next to the provider’s in the patient’s electronic medical record.
At the end of the study, 79 percent of patients and 74 percent of clinicians said they thought the process helped improve communication during the visit. Seventy-three percent of patients and 82 percent of clinicians wanted to continue the practice. Elmore agrees the cogeneration of clinic notes is something she’d like to see more of in the future.
“Patients type things I wouldn’t have expected,” says Elmore. “I appreciate their involvement and it helps me do a better job taking care of them.”