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Doctors' clinical notes historically have not been shared with patients, but a clinician involved with the year-long OpenNotes project through Beth Israel Deaconess Medical Center said giving patients easy access to those narratives is a big step toward engaging patients in their own care.
Findings from the project's initial 12-month phase that began in the summer of 2010 have not yet been published, but physicians who chose to participate in the project have continued to make their clinical notes available to patients, and the three participating institutions are looking at ways to expand open-notes efforts, nurse and clinical investigator Jan Walker said during an April 24 online presentation hosted by the National eHealth Collaborative.
Walker described the project as a “simple” effort to give patients access to the notes their doctors wrote about clinical visits. Patients are alerted by email when their doctors sign the notes, making them available to them through a patient portal where patients could already access other personal health information. Patients are also reminded about notes prior to follow-up appointments with their doctors.
Researchers did not provide any education to patients about how to read the notes or clinical terms their physicians might use, nor did they direct doctors who agreed to participate to change how they wrote notes, Walker said.
She expects findings from the initial 12-month study period to be published soon.
In meantime, she said, the project continues, even though participating physicians and institutions could have backed out.
“The bottom line question we were trying to answer was would they want to continue,” Walker said, explaining that researchers were as interested in whether patients would find value in having access to their physicians' clinical notes as whether doctors would be willing to continue allowing patients to access information previously reserved just for providers.
Walker noted that the Health Insurance Portability and Accountability Act has long given patients the right to ask for access to the clinical notes doctors included in their patient records, but that giving patients automatic access and inviting them to review those notes is new.
At the start of the project, participating and non-participating physicians were more likely than patients to be concerned about the usefulness of the notes to patients and whether the information would be confusing or cause concern for patients, Walker said. Doctors also worried about the potential for workload burdens created by patients calling or emailing with questions about the notes.
Researchers also wondered whether doctors would be inclined to change how they wrote or edited the notes, Walker said.
Comments from patients whose doctors participated in the project raised other questions about how some individuals might change their interactions with their doctors when they learn what information goes into the notes, Walker added.
She said that through the OpenNotes project researchers have learned that, like elsewhere in health care, the aim is the help patients, but that there are side effects that “may hurt some people.”
Going forward, she said, clinicians have to learn to use the transparency of open notes effectively and the costs for the technology has to come down to make the effort valuable for providers and patients.
She said a next step for OpenNotes might be making narratives from specialists or even nurses, not just primary care physicians, available to patients.
“One possibility is that doctors and patients may end up writing notes together, which we'd love to see,” Walker said. “It would be a great way to engage patients.”
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