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‘OpenNotes Is Not a Project, It’s a Movement’

September 17, 2013
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Concept spreading to Mayo, Cleveland Clinic, MD Anderson

National Health IT Week kicked off with a bang Monday in Washington, D.C., with the third annual Consumer Health IT Summit, which featured enthusiastic speeches by Todd Park, U.S. Chief Technology Officer; Farzad Mostashari, outgoing National Coordinator for Health IT; and Leon Rodriguez, director of the Office for Civil Rights, as well as entrepreneurs and activists working on Blue Button projects.

My favorite section of the meeting was a panel discussion devoted to consumer access to data and moderated by Claudia Williams, director of State Health Information Exchange program at ONC.  Tom Delbanco, M.D., founding chief of the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center in Boston, stole the show with his discussion of the OpenNotes project, which gives patients the ability to read their doctors’ notes about their visits. At Healthcare Informatics we have written quite a bit about OpenNotes. I wrote about it in 2012 and my colleague Rajiv Leventhal followed up with some coverage in May of this year.

Despite our recent reporting, I was surprised at how quickly the concept seems to be catching on in academic medical centers. But as Delbanco pointed out, OpenNotes isn’t a project anymore; it has grown into a movement. Beth Israel Deaconess is rolling it out across the enterprise. Organizations ranging from Mayo Clinic and Cleveland Clinic to MD Anderson Cancer Center and the Veterans Health Administration are adopting it. Kaiser is considering a pilot project, he said.

“We learned that patients were excited by it,” Delbanco said. Ninety-nine percent of surveyed patients said they would like the effort to go on after the first year. Many said it would make a difference in how they choose a doctor. Seventy percent said they were better at medication adherence because of it. “We don’t know if that is true,” Delbanco said, but even if only one-fifth of those people are improving medication adherence, it is a big deal. One big surprise, he said, was that the elderly and those without high school diplomas were at least as interested in reading the notes as everyone else.

Delbanco also believes the OpenNotes movement has even greater potential in terms of patient safety, because patients and their families are good at catching errors in notes. He said his organization has received a grant to study how it might impact patient safety. He suggested other possibilities: Rather than just an invitation to read a doctor’s note, how about asking patients to come up with three questions important to them? Or asking if the note is accurate? What should be different? Or asking the patient to write the history or to jointly author it — to see it as a contract between patient and doctor or between patient and care team. “Why shouldn’t everybody be involved in creating what is the hub of the wheel?” he asked.

The larger movement of consumers pushing for their own health data “has a beautiful validity,” Delbanco said. “There is nothing counterintuitive about it. The question is, why haven’t we been doing it already?”






Certainly, notes in the context of mental health, drug abuse, etc. present special problems and concerns. But no one seems to be talking about the challenges inherent in pediatrics. The issues surrounding security and control are convoluted in the extreme by the influences of custody and "age of emancipation".

Thanks for commenting, Dr. Shaw. I am sure you are right that the issues of security, privacy and consent are even more complicated in pediatric medicine.

Do you know of examples of pediatric hospitals sharing notes with parents and patients?

Is there something that regulators and/or legislators need to address?