Of the 9.3 million patients covered by Kaiser, almost half—4.4 million, says Garrido—are active users who log in to their
personal health records to view lab results, refill prescriptions, or otherwise participate in their own treatment and care.
A pilot program in the northwest is going one step further by giving patients access to their doctor's progress notes from
past appointments within the EHR.
The "progress notes" pilot program at Kaiser is modeled on the OpenNotes research project spearheaded by Tom Delbanco, professor
of general medicine and primary care at Harvard and Jan Walker, a member of the research faculty at Harvard and Beth Israel
In an October 2012 Annals of Internal Medicine article, Delbanco, Walker and colleagues published research (funded by The Robert Wood Johnson Foundation and other charitable
organizations) suggesting that physician notes, taken during an appointment, can have a substantial impact on behavior and
adherence when the notes are freely shared with patients (see sidebar). The authors conclude "open notes seem worthy of widespread
adoption," since "patients accessed visit notes frequently, [and] a large majority reported clinically relevant benefits and
minimal concerns, and virtually all patients wanted the practice to continue." Sixty to 78% of participating patients reported
an increased adherence to their medications. On the physician side, "doctors experience[ed] no more than a modest effect on
their work lives," the authors wrote.
OpenNotes: Bending the Adherence Curve
Kaiser's EHR provider is Epic, and Garrido says it's not so easy to customize functionality in the EHR, and corresponding
personal health record. But Kaiser figured out a way. "We've created these smart phrases that essentially copy the physician's
progress note into what is called the "after visit summary" in Epic, says Garrido. In addition to printed information given
after a visit—current meds discussed, patient instructions, other physician comments, etc.—that information is also archived
within the patient's personal health record and accessible at any time. The ability to refer back to exactly what a physician
said, days or weeks after an appointment, is a simple but effective tool in driving healthy behavior, Garrido says.
Plus, the notes appear in the health record without any additional typing or effort from physicians; adding another data entry
requirement to a patient visit is a sure way to kill any new program, notes Garrido. Patients in the Kaiser EHR system still
have to log in through a rigorous authentication system for access—which can be a barrier for some patients—but Garrido is
hopeful that Epic will be able to create a button or some easy way for patients to simply mark or click for speedy access
to progress notes from recent visits with physicians.
Asked about biometric data as a potential component of a patient's health record, Garrido emphasized the importance of patient
reported outcomes, and the integration of a patient's perspective and experience into any treatment plan. Are patients willing
to open up their biometric sensor data to health insurers? "Some patients want to do it, but it's really up to the physicians
to decide why they want this data," says Garrido. "We're relying on clinicians, currently, to encourage sharing of [biometric]
On the flip side, not every doctor is comfortable sharing his dispassionate assessment and clinical notes with patients; it
challenges the traditional notion of physician/patient hegemony by creating a medium for a patient's critique of a physician's
choices. But most of the time, it probably just leads to healthy dialogue. Delbanco's OpenNotes research provides data suggesting
that many apprehensions about sharing information fade with actual experience.
Rulon says Pfizer is looking at "testing out Blue Button"—a digital tool used in some CMS health plans that lets patients
easily download their EHRs and other personal health data —"in clinical trials, so patients could actually access the information
from their clinical trial participation...which would become part of their personal health record." The benefit, says Rulon,
is that patients could more easily "see whether that medication is something that works for them, or not."