The Next Phase of the OpenNotes Movement

Feb 2, 2016, 10:49 AM, Posted by Susan Mende

What happens when patients gain access to the notes their doctors and nurses take during a visit? A culture shift with empowered and motivated patients at the center.

Medical professions looking at patient records.

In December I was proud to announce an exciting partnership with three other foundations—the Cambia Health Foundation, Gordon and Betty Moore Foundation, and the Peterson Center on Healthcare—to take a bold step to expand access to clinical notes written by doctors, nurses, and other clinicians to 50 million patients nationwide. The $10 million in new funding to OpenNotes will allow the initiative to dramatically step up its efforts to create a new standard of care and set a new bar for patient-centeredness.

We know that physicians can help their patients become more engaged in their own care, and that this kind of patient activation can lead to improved outcomes and lower health care costs. Of course, that is easier said than done—especially when clinicians are already under pressure to adopt new technologies, implement new models for delivering health care, and make data on the quality of their care publicly available.

Health care innovators are unrelenting in their search for simple, scalable solutions to help both clinicians and consumers—and philanthropists can help put these bright ideas to the test to determine what works. OpenNotes is one such solution.

“What we see increasingly is that engaged patients have better outcomes.”
– Kevin Tabb, MD, President and CEO, Beth Israel Deaconess Medical Center in Boston, MA

RWJF’s investment in OpenNotes dates back to 2010, when we funded a one-year pilot for OpenNotes. More than 20,000 patients and 100 primary care physicians at Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania, and Harborview Medical Center in Seattle had access to their notes.

The results were striking:

  • Eighty percent of patients chose to read their notes.
  • Patients reported feeling more empowered and knowledgeable about their medical conditions.
  • Seventy percent of patients taking medications for ongoing illnesses reported improved adherence to their medications.
  • Eighty-six percent of patients reported that availability of clinical notes would affect their future choice of a practice or clinician.
  • Ninety-nine percent of patients wanted the practice to continue.

Physicians and other clinicians found that their fears about opening clinical notes—that it would require more of their time or confuse, offend, or worry patients—did not materialize, and no physicians chose to stop participating. Fewer than 8 percent of doctors reported taking more time to address patients’ questions outside of scheduled visits, such as via phone or email; fewer than 20 percent of doctors reported taking more time writing notes.

More recently, researchers at Geisinger Health System published a study that found that patients with access to their clinical notes were more likely to take their medications as prescribed—an important finding given the critical role it plays in helping patients stay well.

Encouraged by these strong findings, the OpenNotes movement has worked to spread and formally evaluate the impact of opening clinical notes to patients over the last three years. Patients served by the Billings Clinic, Boston Children’s Hospital, Cleveland Clinic, Hot Springs County Memorial Hospital, Kaiser Permanente Northwest, Mayo Clinic, MD Anderson Cancer Center, the entire Veterans Administration, and many others currently have access to their clinical notes. There is no new software for health care organizations to install—they simply “flick a switch” on their electronic health record (EHR) system to allow patients access to their clinical notes.

Over the next three years, the new phase will:

  1. Spread the effort to 50 million patients nationwide through several strategies. For example, OpenNotes will work to spread fully throughout pilot sites—which often begin with one clinic or department—and recruit more safety net providers. Reaching vulnerable patients between visits has been a longstanding problem in health care that can be addressed, at least partially, through open notes.
  2. Discover initiatives that engage patients and families in their care using clinical notes through existing and future pilots.
  3. Measure and evaluate the value and effectiveness of opening notes.

Opening clinical notes shows great promise for everyone who gives, gets, and pays for care by increasing patient empowerment, improving clinician-patient relationships, and ultimately helping patients achieve their health goals. It’s part of an ever-growing and much-needed movement toward greater transparency, collaboration, and patient-centeredness—and it’s the sort of creative thinking health care needs more of.

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Susan R. Mende is a senior program officer at the Robert Wood Johnson Foundation, working to put consumers first in a value-driven health care system. Read her full bio.