Delbanco: OpenNotes is ‘contagious’

BOSTON—Since OpenNotes first was implemented in Boston, rural Pennsylvania and Seattle in 2010, the number of patients with access to their notes has swelled from 19,000 to nearly 4.5 million as more organizations join the movement, according to speakers at the 2014 AMDIS Fall Symposium.

So far, initial concerns among physicians that OpenNotes would create more work and disruptions has not borne out, said Tom Delbanco, MD, the Richard and Florence Koplow–James Tullis Professor of General Medicine and Primary Care at Harvard Medical School. Only 3 percent of physicians involved in the initial pilot reported spending more time during visits with patients following the launch of OpenNotes. About 25 percent reported that they changed the way they input notes, he said.

Patient engagement is one impact, with 82 percent reportedly opening at least one note. “And they keep reading notes—if you remind them,” he said. Between 20-42 percent of patients showed at least one other person their medical notes, and three out of four patients felt more in control of their care, said Delbanco.

The “most surprising” finding was that 60 to 78 percent of patients reported that they were better about taking their medications. Delbanco said that even if 15 percent of patients did this, “I deserve an enormous prize” due to the notoriously difficult challenge of influencing patient behavior in the area of medication adherence. He cited one statement from a patient who said, “Notes are my pill Nazi.”

In other findings:

• 99 percent of patients wanted to continue to be able to see their visit notes online
• 85 percent of patients said the availability of OpenNotes impacts their future physician choices
• Not one physician requested to stop allowing patient access to records

The program has grown significantly, with the Department of Veterans Affairs, Kaiser Permanente Northwest and Mayo Clinic all adopting OpenNotes, among many other providers. It appears to have a cascading effect in a region once one organization adopts it.

“This is a transmittable virus. We’re excited about it,” he said, calling it “contagious.” Although now 4.5 million patients enjoy access to their records, it’s still only 2 percent of the population. Delbanco said. The goal is for OpenNotes to reach 50 million patients.

Adoption of OpenNotes is rapidly spreading in Oregon. A consortium of health systems, consumer groups and policymakers convened and made a decision to begin allowing patients to view their records. The principle concerns of the 1,105 physicians who participated in one intervention included longer visits, more time writing and editing notes and more time answering questions. However, these issues did not come to pass.

“Compared to the year preceding the intervention, the docs were not getting more electronic messages from patients,” said Homer Chin, MD, MS of OCHIN, a health information network that spans 19 states.

Now more and more healthcare organization are planning launches of OpenNotes. “Once one organization does it, other organizations do it because they don’t want to be left behind,” he said. In the Portland, Ore. area, for instance, “all health systems are moving forward.”

Many are witnessing a promising impact. For example, Kaiser Permanente has seen traffic to its patient portal increase by 400 percent while electronic emails to physicians has remained flat. “There are rare concerns from patients about care,” he said.

• Chin shared several takeaways from the rolling out of OpenNotes:
• The impact to physician well-being is positive
• Physician leadership is critical
• Physician change management is the hardest part of adopting OpenNotes
• The technical piece is a smaller concern, but vendor help is necessary
• EHR adoption is an enabler of OpenNotes

“We’re looking for other regions to do the same thing,” he said.

Looking to the future, more research will study the patient safety implications of OpenNotes, Delbanco said. “There are tons of anecdotes of things wrong in records.” He said more research also is needed on the business case for OpenNotes. 

Delbanco said he does not believe OpenNotes should be required as part of Meaningful Use. “The best way to get mad is for the feds to require it,” he said, noting a preference for a more organic approach to growth.

Another project in the works is called OurNotes, in which both patients and clinicians collaboratively formulate care plans. “In the future, we won’t have medical records—we’ll have travelogues in the cloud."