One of my favorite Seinfeld episodes is the one where Elaine sneaked a peek at her medical record after the nurse left the exam room. Reading it, she discovered that her doctor described her as a difficult patient (because she didn’t want to put a gown on). When her doctor comes into the room, he quickly snatches the chart away and admonishes her, “You shouldn’t be reading that!”
At that time, it was 1996, I bet that most of us would have agreed with the doctor. We all pretty much accepted that the medical record belonged to the doctor, right?
Well now, there is a movement to change that perception. It is called OpenNotes. The goal of OpenNotes is to give patients access to the visit notes written by their doctors, nurses, and other clinicians. According to the OpenNotes tagline, the goal is to literally get patients and clinicians on the same page.
Why do this?
The OpenNotes folks believe that being able to read and discuss your visit notes with your doctor or family member may help you take better control of your health and health care. Further, since we know that patients often don’t fully understand what happened during a visit or can’t remember crucial details, like diagnosis, prognosis or treatment (especially if the clinical condition at issue was complicated or scary), having access to their Notes and sharing them with family members or caregivers, may be very helpful in mitigating that problem.
The OpenNotes team also says that there are important benefits for clinicians because sharing visit notes may help them to establish better relationships and provide better care.
In 2010, more than 100 primary care doctors from three diverse medical institutions across the United States began sharing notes online with their patients. Each site was part of a 12-month study to explore how sharing doctors’ notes may affect health care.
Here are the results of the study that was published in the Annals of Internal Medicine in October 2012:
- Overall 11,155 of 13,564 patients (82%) opened at least 1 note (the exact percent varied by site)
- Of those who opened at least 1 note and also completed a post-intervention survey, 77% to 87% across the 3 institutions reported that open notes helped them feel more in control of their care.
- 60% to 78% of those taking medications reported increased medication adherence [this is BIG!]
- 26% to 36% reported privacy concerns
- 1% to 8% reported that the notes caused confusion, worry, or offense
- And 20% to 42% reported sharing notes with others.
Ah, you might be saying, but didn’t this generate a lot more work for the doctors? The answer was largely “no”.
- The volume of electronic messages from patients did not change.
- Few doctors reported longer visits (0% to 5%) or more time addressing patients’ questions outside of visits (0% to 8%).
- 3% to 36% of doctors reported changing documentation content.
- 0% to 21% reported taking more time writing notes.
At the end of the year, almost all of the patients (99%) wanted to continue sharing visit notes and not a single doctor opted out of the Notes program.
More research is being done to better understand the role that OpenNotes should be playing in the future. Specifically, studies are being done to look at the following issues:
- Patient safety
- Medical education
- Caregiver access
- Mental health (All of Beth Israel Deaconess Medical Center’s psychiatrists and some of its social work team are now piloting open access to mental health notes with a select group of their patients)
The OpenNotes movement
The success of these early experiments with OpenNotes has spawned a movement to enable patients to easily read notes written about their care, and to bring more transparency to medical records.
Already more than 5 million people have access to their clinicians notes through OpenNotes. Here is a map showing participating sites so far:
But the goal is to reach millions more. Watch this video interview with Tom Delbanco, MD, one of the gurus of the Open Notes movement. It was recorded at the 2015 MedX Conference at Stanford University. And if you want to know more about OpenNotes, visit their website at www.myopennotes.org.