OurNotes Project to Explore Patient-Generated EHR Data

Ken Terry

February 03, 2015

Beth Israel Deaconess Medical Center in Boston, Massachusetts, one of the pilot sites for the successful OpenNotes project, is launching a study called OurNotes to test the concept of having patients add to and update their own electronic medical records.

Using a $450,000 grant from the Commonwealth Fund, the medical center will collaborate with its original OpenNotes study partners, the Geisinger Health System of Danville, Pennsylvania, and Harborview Medical Center in Seattle, Washington. Also included in the project are two other organizations that use OpenNotes: Seattle's Group Health Cooperative and Mosaic Life Care in St. Joseph, Missouri.

During the last 5 years, OpenNotes, an approach to giving patients access to their physicians' visit notes, has spread rapidly across the country and is now used by more than 5 million people.

In a news release, Jan Walker, RN, MBA, a cofounder of OpenNotes and principal investigator of the Commonwealth Fund grant, said she viewed OurNotes as an extension of the note-sharing program, which has been shown to increase patient engagement and improve adherence to medications. However, Walker, who works in Beth Israel Deaconess Medical Center's general internal medicine and primary care department and is an assistant professor of medicine at Harvard Medical School in Boston, told Medscape Medical News that the patients in the OurNotes pilots will also have access to other parts of their medical records, such as problem and medication lists.

The grant specifies that for patients to be involved in the pilot, they must have multiple chronic conditions. Although these are the patients who would benefit most from the ability to add to, update, or correct their records, Walker said, they might also not be inclined or have the ability to do so because of their illnesses. So caregivers might play an important role here.

Update and Correct Records

The 20-month OurNotes project, which will initially focus on primary care, will begin with patients, clinicians, and industry experts discussing what kind of information patients might contribute, she said. However, she and her colleagues have already developed some preliminary concepts, including:

  • Visit preparation: Patients or their caregivers could set the agenda for an encounter with their physician by explaining the reason for their upcoming visit on a web portal.

  • "Journaling" between visits: Patients could use the portal to keep track of their care plans, remind themselves of what they need to do, or document intermittent symptoms.

  • Update or correct records: Patients might want to point out that they have been exercising more or that a relative has come down with a chronic condition. They might also correct a mistake in a medication list.

Care planning is also required under the grant. One approach might be for physicians and patients to sign an agreement that obligates each of them do certain things as part of the care plan, Walker said. At the next visit, they could then discuss whether both parties had done what they had promised to.

Walker envisions all of the above going into the electronic record, but admits that busy physicians might not have time to pay attention to the patient-generated content between visits. Perhaps they could look at it during encounters, she suggested.

"I hope this won't be onerous for physicians. I hope it might save them time instead of having prolonged interviews with patients."

Nurses Could Play a Role

Walker also observed that it might make sense for nurses to look at patient-generated content and decide what should be included in the record. That is one possible focus for the OurNotes pilots, she added.

The Palo Alto Medical Foundation in Mountain View, California, has been allowing patients to contribute to their medical records since 2000, using the MyChart feature of its Epic electronic health records (EHR) system. Paul Tang, MD, vice president and chief innovation and technology officer of the foundation, told Medscape Medical News that the multispecialty group has nurses "validate" information contributed by patients before it goes into the EHR.

For example, he noted, patients might say they are not taking a medication anymore or that a diagnosis is incorrect. The nurse can look at their medical record and confirm that a correction is required or appropriate.

A lot of the patient-generated content is coded data, such as influenza vaccinations that patients report they have received at Wal-Mart or somewhere else outside the group. Such data can be used in clinical decision support, noted Dr Tang, so that physicians do not receive mistaken reminders to tell patients to get their influenza shots.

Palo Alto Medical Foundation physicians appreciate this kind of input, he said. However, he added, they would probably be less interested in the number of steps a patient walked in a given day.

Dr Tang is also vice president of the federal Health IT Advisory Committee and chair of its meaningful use committee. From the beginning of that program, he noted, members of the Health IT Advisory Committee have wanted to include criteria related to patient-generated data. The meaningful use stage 3 recommendations that the committee presented to the Centers for Medicare & Medicaid Services include such a provision, he said, and it is expected to be in the proposal that the Centers for Medicare & Medicaid Services will release soon.

The objective, Dr Tang said, will be to have patients complete "structured or semistructured" questionnaires that would be incorporated into the EHR. These questionnaires could be about patients' heart failure symptoms, weight, or blood pressure, or they could be more general surveys related to an upcoming wellness visit.

This is not a new idea, he acknowledged. For example, software such as Instant Medical History has long been used for a similar purpose. But rather than going into the EHR in the form of documents, as the questionnaires in those programs do, "The trick is to have it done in a standardized way so that any EHR can take it in [as discrete data] and incorporate it into the record," he said.


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