Patient Data Access News

OpenNotes Honored for Driving Patient Health Data Access

The award represents OpenNotes' progress in driving patient health data access across the country.

OpenNotes received an award for promoting patient health data access.

Source: Thinkstock

By Sara Heath

- The OpenNotes team has been recognized for its work in supporting patient health data access, being presented with the Health Data Liberator Award from AcademyHealth at this year’s Health Datapalooza.

Led by co-founders Tom Delbanco, MD, and Jan Walker, RN, MBA, OpenNotes reinforces the federally-protected right for patients to view clinical notes from their doctors and nurses. OpenNotes is not a specific technology or tool, but rather the philosophy that clinicians will make these notes openly available for patients.

Since 2010, Delbanco, Walker, and their team have made significant strides in spreading this clinical philosophy. OpenNotes has expanded across the country and allowed nearly 13 million patients in 37 states to access their clinicians’ raw notes.

“Consumers’ ability to review and confirm their own health information can have a transformational effect on their care and outcomes,” said Lisa Simpson, President and CEO of AcademyHealth, which granted the award.

“The work Tom, Jan, and their colleagues have done in increasing patient access to that information — while also building the evidence base for why doctors should be sharing it — is revolutionizing the patient-doctor relationship,” Simpson continued.

READ MORE: How Patient Health Data Access Drives Patient Engagement

Expanding OpenNotes has been no easy feat. Clinicians have been frequent critics of the strategy, expressing concern that patients reading clinician notes will be confused by medical jargon or put off by certain comments.

However, OpenNotes has managed to dispel this concern through extensive research. In its pilot study, OpenNotes showed that patients who view their doctor’s notes feel more confident in their care and are more likely to adhere to prescribed medications. Eighty percent of the participating patients stated that they felt more in control of their health after viewing clinician notes.

Another study published at the end of 2016 showed that patients who can view and flag their clinician notes can help improve patient safety. Researchers extended the ability for patients to mark inconsistencies in their clinician notes, such as inaccurate medical history or medication errors.

Forty-four percent of participants accessed their clinician notes, and about 8 percent used the feedback tool. Of the patients who used the feedback function, 23 percent reported safety concerns.

The researchers categorized 64 percent of the flags as confirmed or possible safety issues. Eventually, 57 percent of patient flags resulted in actual changes to the medical record.

READ MORE: Transparent Provider Communication Key for OpenNotes Success

These studies helped enhance how clinicians manage OpenNotes, according to Walker, who is also an assistant professor of medicine at Harvard Medical School and a member of the research faculty of the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center in Boston.

“A small change in how we manage notes can bring about a cultural change in how health care is delivered and experienced,” Walker said in a statement. “We can enhance the quality of care — and improve the safety of every patient — if we make visit notes transparent and easy to share.”

“In the spirit of ‘nothing about me without me,’ we’re thrilled to be counted among the data liberators,” added Delbanco, who is also a professor of general medicine and primary care at Harvard Medical School.

“We’ve long known that patients are an underutilized resource in health care,” Delbanco continued. “Our work at OpenNotes teaches us over and over again that one of the most important keys to greater activation is giving patients ready access to their own health information.”

Going forward, Delbanco and Walker hope to spread the OpenNotes philosophy across the country.

READ MORE: Arguing for Patient Data Access Amidst Provider Pushback

In December 2015, the organization received a $10 million grant from Cambria Health Foundation, the Gordon and Betty Moore Foundation, Peterson Center on Healthcare, and the Robert Wood Johnson Foundation (RWJF).

Using this funding, OpenNotes leaders hope to inspire more clinicians to offer patients access to their own clinician notes. Ultimately, the organization wants to see 50 million patients with more access to clinician notes.

“OpenNotes will make clinicians’ thinking far more transparent, and that holds both complex and exciting implications for patients, for their family members, and for the host of health providers who care for them,” Delbanco said following the grant’s announcement.

RWJF representative Susan Mende added that her foundation has proudly funded OpenNotes since the pilot was first conducted in 2010.

“Engaged patients who have strong relationships with their clinicians are critical to building a nationwide Culture of Health,” Mende said. “We are pleased to continue to share this innovative approach.”


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