The Patients Have Spoken…

In overwhelming numbers, patients express interest in exploring the notes that their primary doctors write about them after an office visit, but doctors worry about the impact of such transparency on their patients and on their own workflow, according to a study just published in the Annals of Internal Medicine.

Patient and doctor attitudes were surveyed extensively prior to the launch of the OpenNotes trial in which patients at Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in Danville, Pa., and Harborview Medical Center in Seattle were offered online access to their doctors’ notes written after office visits. Such notes have long been primarily a physician’s purview, although patients have the legal right to obtain them.

“Doctors were divided in many of their expectations, and the issues we highlight have important consequences for both their work life and quality of care,” wrote lead author Jan Walker, RN, MBA, of BIDMC’s Division of General Medicine and Primary Care.

While many of the more than 100 primary care doctors who volunteered to participate in this experiment predicted possible health benefits from allowing patients to read their notes, the majority of those who declined participation were doubtful about positive effects. And among the 173 doctors completing surveys, the majority expressed concerns about confusing or worrying patients with the content. Doctors also anticipated that they would write their notes less candidly and that responding to patient questions might be exceedingly time-consuming.

In contrast to the doctors surveyed, the nearly 38,000 patients who completed the baseline survey were almost uniformly optimistic about OpenNotes, and few anticipated being confused or worried

“The enthusiasm of patients exceeded our expectations,” Walker wrote, according to a news release. “Most of them were overwhelmingly positive about the prospect of reading visit notes, regardless of demographic or health characteristics.”

More than 90% favored making the notes available. Well over half anticipated improved adherence to their medications, 90% expected to feel more in control of their care and four out of five predicted they would take better care of themselves.

“We know a lot more about our cars than our own bodies,” one patient wrote. “We leave all of that to the clinicians. I think by having access to our notes, we can take control, and that’s important.”

Half of patients surveyed reported that they would consider sharing their notes with other people, including other doctors.

“As I help my aging mother with her medical needs, I wish I could see the notes her doctors have made,” wrote one patient. “I think it would help me in caring for her.”

The year-long OpenNotes study period has now ended, and Walker and her colleagues in the three sites are eager to learn how the baseline expectations will play out. They are currently evaluating reports from follow-up surveys completed by participating doctors and patients and analyzing other metrics, such as how often patients reviewed their notes, shared them with others or corrected errors their doctors may have made.

I have mixed feelings about this.  As a (relatively!) informed healthcare consumer, I’d like to see what my doctors are writing down about our time together.  I’d like to have access to my lab tests.   But I also understand that reading your own medical information without any context can be scary and misleading.  I’m fortunate in that my primary care provider is an excellent communicator and is quick to let me know if anything should be changed or needs addressing.  But many are not.  And for these providers, I think this study is a real wake-up call.

 

 

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