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“Patients are overwhelmingly interested in gaining rapid access to their notes … doctors have not experienced significant disruptions to their work.”

Hear hear! That’s from a new commentary published Monday in Modern Healthcare about the OpenNotes project, in which patients have full access to their doctor’s visit notes. We’ve written about it numerous times, dating back to our June 2010 “OpenNotes” project begins: what happens when patients can see the physician’s visit notes? (Check out the Seinfeld clip on that post, in which Elaine tries to read her chart and gets marked “difficult” by the doctor!)

OpenNotes is funded by Robert Wood Johnson Foundation’s Pioneer Portfolio, which likes to study the frontiers, the real leading edge of medicine, to anticipate the future. It was a Pioneer Portfolio grant that funded our e-Patient White Paper, and OpenNotes seems a natural cousin, as it explores what happens when patients become more engaged as partners in care.

The full results of the study haven’t been published yet, but the principal investigators are starting to speak. In the Modern Healthcare commentary, principal investigators Dr. Tom Delbanco and Jan Walker, RN, MBA say: (Emphasis added)

We urge the government, other payers, clinicians and consumers to move even further forward. If consumers are to become truly active partners in their own healthcare, they should be able to retrieve their personal medical information readily, including their doctors’ notes. As doctors and hospitals increasingly use information technologies to embrace transparency and information-sharing, let’s move toward “open notes” and adopt them proactively and eagerly, rather than with mumbling and grumbling.

They continue:

As a primary-care doctor with 40 years of experience with patients, teaching and studying health services, and as a nurse who promotes the use of information technology to improve care, we understand that engaging patients actively in promoting health and managing illness is a long-standing but elusive goal of healthcare. We also believe that giving patients access to their own medical notes may help them manage their care more effectively and join in efforts to detect and prevent medical errors.

Importantly, OpenNotes was designed to include an urban academic setting (Beth Israel Deaconess in Boston), a rural setting (Geisinger in Pennsylvania), and a safety net population (Harborview, Seattle). This will allow detecting which outcomes and attitudes are the same across settings and which ones vary.

A hint of great news to come, for lovers of participatory medicine:

We are learning that patients are overwhelmingly interested in gaining rapid access to their notes and that many doctors appreciate the potential for open records to improve care. … The enthusiasm of patients appears to cut across all lines of age, health status and education. And while many doctors turned down our invitation to join the one-year project, citing fears that their notes would adversely affect their already onerous work flow and frighten or confuse patients, only one doctor who signed up for the study later dropped out, and that was for personal reasons. … Moreover, hallway conversations indicate that doctors have not experienced significant disruptions to their work…

That’s all I can quote here, due to copyright regulations. But clearly the authors are excited, and so am I. As my own physician Dr. Danny Sands has said, “How can patients participate if they can’t see what I see?”

Can’t wait to see the detailed results, as they unfold in journal articles yet to come.

(btw, the full article is behind a paywall, dagnabbit! Isn’t this supposed to be about patients seeing what the doctors see?? Last year’s article in the Annals of Internal Medicine was open access – can Modern Healthcare please do the same?)


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