WASHINGTON, D.C.—The OpenNotes effort to allow patients access to their own records has grown significantly over the past few years and John Mafi, MD, discussed at the ONC 2015 Annual Meeting the recent $450,000 grant from The Commonwealth Fund to develop OurNotes, an initiative to promote active patient engagement in health and illness that invites patients to contribute to their own EMRs.

Studies indicate that patients forget 40 to 80 percent of what their doctor just told them and of what they do remember, about half is wrong, said Mafi, a fellow in internal medicine at BIDMC. “The appeal with OpenNotes is that patients feel more in control of their own care and remember their plan of care better.”

Two-thirds of OpenNotes users reported better medication adherence. By expanding the effort, “the hope is for freed up time during visits for shared decision-making. Patients can think about what really matters to them and contribute to the care plan.”

The biggest hurdle, he said, is making sure clinicians are supported rather than adding to their workflow.  

Through the OurNotes grant, participating organizations will build, implement and pilot test patients and physicians co-generating their medical records. We think of this in three paths, Mafi said. Previsit data entry, during the visit and after the visit, particularly for people with chronic disease. “They can sign off on the plan and make sure it’s truly patient-centered and we can measure what that does to chronic disease care and patient and physician satisfaction.”

Currently, Mafi said the team is measuring those things that are easily measured. “We’re finding that there are very few things where one size fits all.” They’re also working on promoting shared decision-making and getting the patient’s perspective into the record. “We currently don’t measure whether treatments are matching patients’ values. In fact, data show most don’t. Health IT needs the patient’s voice.”

Studies show that 60 percent of patients would view their notes within 30 days and that level was sustained for two years, said Mafi. At Geisinger Health System, however, they stopped inviting patients to view their records and note viewing plummeted to about 10 percent. “The key difference is push invitations.” Although about 5 million patients have access to their records through OpenNotes, “no organizations are doing the invitation piece with the exception of two places. As we see OpenNotes spread rapidly, we’re probably going to see low viewing rates unless organizations are doing push invitations.”

OurNotes will focus on chronically ill patients, he said. “We need to be intelligent about this. We need a multifaceted approach and policies narrowing healthcare disparities. On the ground level, we need an effort to engage these patients.”

Researchers plan for OurNotes to allow patients to add topics or questions they’d like to cover during an upcoming visit to create efficiency for those visits, as well as review and sign off on notes after a visit to make sure patients and clinicians are on the same page.”

The Commonwealth Fund grant will support work at five sites, including original OpenNotes study partners, BIDMC, Geisinger in Danville, Pa., and Harborview Medical Center in Seattle, Wash., and more recent OpenNotes adopters, Group Health Cooperative, also in Seattle and Mosaic Life Care in St. Joseph, Mo.