Today AcademyHealth announced Tom Delbanco, M.D., Jan Walker, R.N., M.B.A., and their colleagues as the winner of this year’s Health Data Liberator award. The award recognizes the team’s work on OpenNotes, an initiative that encourages health care providers to share their visit notes with patients.
“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. “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.”
While patient access to the notes that doctors, nurses and other clinicians write after a visit is a federally protected right, only about 3 percent of patients have access. OpenNotes’ goal is to make open notes the standard of care for all patients nationally. And, they’ve made significant progress since their inception in 2010. More than 13 million people in 37 states now have access to their notes.
Health care providers can be reluctant to share notes with patients for fear they won’t understand them or will find the contents distressing. But study after study reveals compelling reasons to do so. Patients report feeling more in control of their care, more prepared for visits, and having understood their conditions better, while health care providers are pleased to hear that patients with access to their notes were also better about taking their medication.
“A small change in how we manage notes can bring about a cultural change in how health care is delivered and experienced,” said OpenNotes co-founder Walker, 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. “We can enhance the quality of care – and improve the safety of every patient – if we make visit notes transparent and easy to share.”
The Health Data Liberator Award recognizes extraordinary contributions to the liberation of health data that fosters improvement in the health care system. Prior recipients include Fred Trotter, CEO, DocGraph (2016); Niall Brennan, former director and chief data officer, Centers for Medicare & Medicaid Services (2015); Charles Ornstein, senior reporter, ProPublica (2014); and Nirav Shah, senior Vice President and Chief Operating Officer, Kaiser Permanente (2013).
“Bottom line: OpenNotes makes health care more open and transparent to those who are actually receiving the care in question” said last year’s recipient Trotter, CTO, CareSet Systems. “OpenNotes changes the role of EHR technology to stop acting like yearly almanacs and start acting more like daily newspapers."
“In the spirit of ‘nothing about me without me,’ we’re thrilled to be counted among the data liberators,” said Delbanco, co-founder of OpenNotes and professor of general medicine and primary care at Harvard Medical School. “We’ve long known that patients are an underutilized resource in health care. 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.”