Patients push for transparency: OpenNotes at Northwest Permanente

The patient-physician relationship has long been uni-directional: The clinician determines a diagnosis and treatment plan, and the patient follows along, taking the clinician's word at face value. But now, patients have developed the autonomy and desire to be active participants and decision-makers when it comes to their care.

This transition became fairly evident to Kaiser Permanente in 2014 when the Northwest division of the Oakland, Calif.-based health system was contemplating launching an OpenNotes initiative.

OpenNotes is a nationwide movement encouraging clinicians to share clinical notes and visit summaries with their patients. The formal initiative was introduced in 2010 and three health systems underwent a trial run of the initiative: Beth Israel Deaconess Medical Center in Boston; Geisinger Health System in Danville, Pa.; and Harborview Medical Center in Seattle.

Three years later, a Portland, Ore.-based organization called We Can Do Better, which advocates for the triple aim, held a conference and discussed OpenNotes with attending health systems. The organization presented a study in Annals of Internal Medicine that outlined the success the initial three health systems had with their OpenNotes projects, and the attendees signed on.

"There was so much support [at that meeting] that basically all the major medical organizations in Portland said, 'We're going to do this, and we're all going to do this on the same day so that nobody gets out ahead and tries to claim competitive advantage,'" says Robert Unitan, MD, director of optimization and innovation at Northwest Permanente. Dr. Unitan wasn't at the conference, but he says it was the turning point for the initiative in the region.

At Northwest Permanente, the project was floated by the organization's patient advisory group, and the patients' reactions to the proposal were not what leaders expected.

"We expected [the patient advisory group] to fall all over us and say, 'Isn't this wonderful.' But no, it was, 'Damn it, what's taking you so long? We've wanted this for years, and you're finally coming around to it,'" Dr. Unitan says.

Because of this pressing and overwhelming demand from patients to have access to their clinical notes, Northwest Permanente decided to move forward with a "big bang" launch on April 8, 2014, when all departments participating in OpenNotes launched the initiative at the same time, something Dr. Unitan says isn't very common.

"Almost no other health system has done it the way we did it," he says. "They pilot their way in slowly and hope it becomes part of the culture."

How it works — and how Northwest Permanente got there
Though it is a formal initiative, OpenNotes doesn't have a specific technology or software requirement. Participating organizations have to configure their IT systems to support the sharing of clinical notes.

Kaiser Permanente is an Epic organization, and patients accessing their clinical notes do so through their patient portal. After a visit, a patient will receive an email to let them know a new note is available. Then, they simply go in and view it.

Dr. Unitan says clinicians did exhibit some initial pushback and were concerned with having to "sanitize" or simplify notes. Leadership gave the clinicians some tips and tricks to help ease the transition, like not using abbreviations that could be misunderstood, such as SOB, which in healthcare generally translates to "shortness of breath" for physicians but in the outside world means something different entirely. Other tips include not dumbing notes down and just writing notes as normal.

"[Clinicians] say, 'Oh patients won't understand the words,' but everyone can Google anything, and they can find out what those words mean," Dr. Unitan says. "That's why it's really a non-issue."

Additionally, Northwest Permanente had to decide how to configure its OpenNotes program, such as whether to send email notifications — which it opted to do — and allow clinicians to hide certain notes, which it also opted to do if clinicians deem it appropriate, like in a domestic violence case.

Progress to be made
All Northwest Permanente's primary care providers are using OpenNotes, as well as almost all specialty care providers. Those not participating in the initiative are those on the inpatient side, the emergency department, and mental and behavioral healthcare providers.

Dr. Unitan cites confidentiality issues regarding mental and behavioral health, but he also notes the majority of behavioral healthcare generally takes place in the primary care setting now.

Despite the success Northwest Permanente has demonstrated with OpenNotes, the rest of Kaiser's regions are not yet participating in the initiative, which is a point of contention for Dr. Unitan.

"The vast majority of Kaiser's 10.5 million patients do not have access to this because for whatever reason, their regions have decided not to go there," Dr. Unitan says. "It's kind of surprising it hasn't taken off, and I'm a little disappointed in my own system."

But use of OpenNotes is expanding across the country. In December, the initiative received $10 million in expansion grants from the Cambria Health Foundation, the Gordon and Betty Moore Foundation, the Peterson Center on Healthcare and the Robert Wood Johnson Foundation.

"[Launching OpenNotes] was not the big disaster everyone was thinking it was going to be," Dr. Unitan says. "It is well-received by patients everywhere it has been done."

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