Patients feel more control of their health when doctors share notes

Patients with access to notes written by their doctors feel more in control of their care and report a better understanding of their medical issues, improved recall of their care plan and being more likely to take their medications as prescribed, a Beth Israel Deaconess Medical Center-led study has found.

participating in the OpenNotes trial at BIDMC, Geisinger Health System in Danville, PA and Harborview Medical Center in Seattle reported that most of their fears about an additional time burden and offending or worrying patients did not materialize, and many reported enhanced trust, transparency, and communication with their patients.

The findings were published in the Oct. 2 issue of the .

"Patients are enthusiastic about open access to their doctors' notes. More than 85 percent read them, and 99 percent of those completing surveys recommended that this transparency continue," says Tom Delbanco, MD, co-first author, a primary care doctor at BIDMC and the Koplow-Tullis Professor of General Medicine and Primary Care at Harvard Medical School. "Open notes may both engage patients far more actively in their care and enhance safety when the patient reviews their records with a second set of eyes."

"Perhaps most important clinically, a remarkable number of patients reported becoming more likely to take medications as prescribed," adds Jan Walker, RN, MBA, co-first author and a Principal Associate in Medicine in the Division of General Medicine and Primary Care at BIDMC and Harvard Medical School. "And in contrast to the fears of many doctors, few patients reported being confused, worried or offended by what they read."

The findings reflect the views of 105 and 13,564 of their patients who had at least one note available during a year-long voluntary program that provided patients at an urban academic medical center, a predominantly rural network of physicians, and an urban safety net hospital with electronic links to their doctors' notes.

Of 5,391 patients who opened at least one note and returned surveys, between 77 and 87 percent reported open notes made them feel more in control of their care, with 60 to 78 percent reporting increased adherence to medications. Only 1 to 8 percent of patients reported worry, confusion or offense, three out of five felt they should be able to add comments to their doctors' notes, and 86 percent agreed that availability of notes would influence their choice of providers in the future.

Among doctors, a maximum of 5 percent reported longer visits, and no more than 8 percent said they spent extra time addressing patients' questions outside of visits. A maximum of 21 percent reported taking more time to write notes, while between 3 and 36 percent reported changing documentation content.

No doctor elected to stop providing access to notes after the experimental period ended.

"The benefits were achieved with far less impact on the work life of doctors and their staffs than anticipated," says Delbanco. "While a sizeable minority reported changing the way their notes addressed substance abuse, mental health issues, malignancies and obesity, a smaller minority spent more time preparing their notes, and some commented that they were improved."

"As one doctor noted: 'My fears? Longer notes, more questions and messages from patients … In reality, it was not a big deal.'"

Walker suggests that so few patients were worried, confused or offended by the note because "fear or uncertainty of what's in a doctor's 'black box' may engender far more anxiety than what is actually written, and patients who are especially likely to react negatively to notes may self-select to not read them."

"We anticipate that some patients may be disturbed in the short term by reading their notes and doctors will need to work with patients to prevent such harms, ideally by talking frankly with them or agreeing proactively that some things are at times best left unread."

"When this study began, it was a fascinating idea in theory," says Risa Lavizzo-Mourey, MD, president and CEO of the Robert Wood Johnson Foundation, the primary funder of the study. "Now it's tested and proven. The evidence is in: support, use, and benefit from open medical notes. These results are exciting – and hold tremendous promise for transforming patient care."

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