Seeing what your physician wrote can affect how you view your health.
When you go see your physician, you expect them to spend part of your visit taking notes or tapping away on their keyboard, updating your medical chart.
What you probably don’t expect is to ever actually see those notes.
But you could. And a growing body of research suggests that doing so can be helpful for your care.
Leading the charge toward increasing transparency and access for patients’ medical records is OpenNotes, a research organization based out of Boston.
OpenNotes is the culmination of what originally began as a pilot study in 2010, in which three healthcare organizations — Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania, and Seattle’s Harborview Medical Center — invited patients to be able to access and read their doctor’s notes through their online patient portal.
The goal of OpenNotes begs the question: In an era of on-demand apps and seamless internet access, where a ride or pizza can be at your front door within minutes, why shouldn’t you be able to have the same ease of access to your electronic medical records?
The original study, published in the journal Annals of Internal Medicine in 2012, included just 105 primary care doctors and roughly 13,000 patients. Since then, OpenNotes has expanded to include more than 40 million patients who are registered at more than 200 healthcare organizations that share doctors’ notes online.
“The findings from that original study showed that patients got a lot of benefit out of reading their notes,” Cait DesRoche, DrPH, the executive director of OpenNotes told Healthline. “They reported a lot of benefits related to feeling more in control of their care, understanding their care plan and remembering it, doing a better job taking their medications — a variety of benefits.”
Furthermore, at the end of the one-year study period, 99 percent of patients wanted to continue access to their notes. No doctors chose to stop sharing them.
But exploring the patient-side aspect of the OpenNotes proposal is just one part of a healthcare visit.
“The clinicians were initially very reluctant. It actually took much longer than planned to recruit enough clinicians, because they were so reluctant to do it,” DesRoche said.
More transparency seemed like more work. Wouldn’t patients bother them about things they didn’t like in their charts? Would they request frivolous changes? The worry for already overworked doctors was obvious.
But none of that came to pass.
“They were not overwhelmed with requests to change things in the record by patients who were confused or upset by something they read. Those things really didn’t happen, and when given the opportunity to turn it off, none of them turned it off,” DesRoche said.
In subsequent years, further studies have also shown that note-sharing is a simple, promising policy to improve quality of healthcare.
A seven-year follow-up of the original OpenNotes research, published earlier this summer, included a far larger pool of both patients and doctors. Again, the results supported prior observations that access to the notes made patients feel more in control of their care and helped them stick to their health plan and medication.
The findings were especially true for patients who were older, nonwhite, or non-English speaking. Non-English speakers were more likely than English speakers to use the notes to help them prepare for visits and stick to their health plan.
That suggests that sharing notes is a simple way to improve healthcare for minority groups in the United States.
The healthcare systems in the United States are notoriously fickle and slow-moving. How realistic would it be to grant access across the entire country?
Well, surprisingly, accessing doctors’ notes and other elements of your healthcare record has been part of federal law since 1996.
The Health Insurance Accountability and Portability Act (HIPAA) under President Clinton is a dense piece of legislation, but what it does do is guarantee patients access to their medical records.
However, it doesn’t make getting those records easy.
Patients may still have to deal with paperwork, phone calls, and even faxes. There can be fees attached as well.
The innovation of OpenNotes isn’t giving patients access to their records, but streamlining that process: putting it easily within reach via the internet rather than dealing with the endless bureaucracy of a medical records office.
And doing so has proved to be far less of a headache than it seemed.
Dr. Ira Nash, senior vice president and executive director of Northwell Health Physician Partners, one of the largest medical groups in the United States, told Healthline that Northwell Health has been steadily integrating an OpenNotes policy.
“I think it’s really not that hard, and I think it’s a very good thing,” Nash said.
Northwell originally gave patients an option to “opt in” to receive doctors’ notes and other care information online via their patient portal. But at the end of 2018, they made the dramatic decision to make access to doctors’ notes the standard. Instead patients had to explicitly “opt out” if they didn’t want to be part of the program.
And while Nash says that Northwell hasn’t collected specific data on patient satisfaction related to the OpenNotes policy, anecdotally the response has been similar to what previous research has also suggested: Patients seem to like the additional transparency.
Their plan for the future is to continue to increase access to different kinds of records for all patients via their portal.
“I think that’s where this is going: to make more and more of the material that we have routinely available to patients,” Nash said.
For readers interested in accessing their notes, there are a few simple steps you can take.
First, investigate your patient portal, the online access hub where you manage everything from prescriptions to scheduling a doctor visit. You may already have access to some records and just don’t know it.
Don’t be afraid to ask your doctor, either. While it can be intimidating, your doctor can likely confirm whether notes are shared via the patient portal or not.
Finally, check with a medical information officer or patient experience liaison to see how your hospital or clinic handles requests for medical records.