Health IT, Patient Engagement

OpenNotes initiative to share doctor notes with patients gets singled out for recognition

Cofounders Dr. Tom Delbanco and Jan Walker received the Data Liberator award at Health Datapalooza this week. The award highlights people, organizations and initiatives improving data transparency and access in healthcare.

From left: OpennOtes Cofounders Jan Walker and Dr. Tom Delbarco and Fred Trotter, DocGraph CEO

From left: OpenNotes Cofounders Jan Walker and Dr. Tom Delbanco, with Fred Trotter, DocGraph CEO

The OpenNotes initiative, which is designed to give patients access to their physician’s notes, received the Data Liberator award at Health Datapalooza this week. The recognition highlights the work undertaken by Cofounders Dr. Tom Delbanco, Jan Walker, and their team since 2010 to build the number of patients who can access these notes to the current level of 13 million in 37 states.

Fred Trotter, CEO of DocGraph, presented the award after winning it last year for his group’s work in providing multiple datasets to help researchers, journalists, and companies. The group’s most well-known data release was the Medicare Teaming Data Set, to help organizations understand how providers work together to care for Medicare patients.

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When the initiative started in 2010, OpenNotes was a pilot to give patients full access to progress notes from 100 primary care physicians at Beth Israel Deaconess Medical Center in Boston, Harborview Medical Center in Seattle and Geisinger Health System in central Pennsylvania. In 2015, OpenNotes received $10 million in donations in a bid to grow the number of patients that could access their physician notes from 5 million in 2015 to 50 million. The funds came from Cambia Health Foundation, the Gordon and Betty Moore Foundation, the Peterson Center on Healthcare, and the Robert Wood Johnson Foundation. 

“This award recognition means a lot to us. Our hope is that this will nudge more providers to adopt this approach to openness,” said Walker.

She said they are indebted to countless providers who have taken part in the program and continue to do so. Walker noted that 85 percent of patients said being able to read their physician notes would factor into their choice of providers.

“Family caregivers tell us their ability to read notes makes them more effective caregivers,” said Walker. “We were encouraged by patients finding mistakes in their notes that can be corrected before something bad happens.”

Walker, who trained as a registered nurse and is an assistant professor of medicine at Harvard Medical School, added, “We are indebted to countless providers” who have taken part in the initiative. 

A study evaluating the impact of the OpenNotes initiative published in the New England Journal of Medicine a few years ago found that many patients who gained access to these notes reported having better recall and understanding of their care plans and feeling more in control of their healthcare. Two-thirds of patients who were taking medications reported improved adherence.

“Janet is the gentler half of this pair,” Delbanco quipped. “She wants to give you a nudge. I want to give you a kick.”

He recalled that although some physicians have embraced the OpenNotes project, others have flatly declined to do it, while others have simply said they’re too busy to take part.

“It is a big culture change and it isn’t easy,” Delbanco said. “I want each of you to leave and be determined to do something about [access to doctor’s notes]. It’s to the benefit of the patient, the patient’s family, and clinicians. Clinicians will be helped by patients.”


Photo: Casey Quinlan, Twitter