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OpenNotes pilot suggests greater patient engagement is on the horizon

Physicians get nervous at the thought of patients seeing their notes, but the OpenNotes patient engagement pilot suggests those fears are misplaced.

The expression "S.O.B." was at the heart of a conference in Washington, D.C., on OpenNotes, a mechanism for giving patients access to everything clinicians write about them in an electronic health record. In medical parlance, it's an abbreviation for "shortness of breath."

Not, as some patients might infer if they were to see it in their medical record, "a difficult patient," as Risa Lavizzo-Mourey, M.D., president and CEO of the Robert Wood Johnson Foundation (RWJF) put it politely, identifying the crux of the patient engagement issue -- how providers and their patients communicate, and who owns health information.

Lavizzo-Mourey joined several hospital executives, representatives from the American Hospital Association and Consumer Reports' Health Ratings Center, and physicians involved in a recently concluded year-long, RWJF-funded OpenNotes trial to discuss the findings gathered from 105 participating physicians and 19,000 patients.

Researchers found that patients in the trial embraced open access to clinician notes, and the large majority of patients said they wanted access to continue after the study pilot ended. A similarly large percentage of physicians found that opening their notes to patients didn't generate many follow-up calls from patients asking for interpretation of those notes -- an important consideration, because many physicians who declined to participate in the study cited that as their number-one fear.

Panelists agreed that not only does OpenNotes technology enable sharing of patient data presently stranded in proprietary EHRs, but it also can mark an interesting path to meeting meaningful use patient engagement mandates. While physicians can't force patients to access their health data, stage 2 requires physicians to attest that at least 5% of their patients do so.

But the pilot also revealed potential disconnects between what doctors write and how it's perceived by patients. That "S.O.B." thing? No technology can correct that.

Health care practitioners will need to retrain themselves to speak in plainer English. Meaningful use uses EHRs to force open medical records to patients, and get them more involved in care. That won't happen if the electronic record reads like a foreign language, or worse yet, street slang. Clear language, panelists said, will also have to cover software vagaries such as the EHR automatically indicating a patient has kidney disease thanks to a slightly abnormal lab result, even when the physician himself doesn't consider the patient to have that diagnosis.

Indeed, throwing open electronic patient files is an important enough issue that OpenNotes should be considered as meaningful use stage 3 mandates are developed, said Christine Bechtel, patient advocate and National Partnership for Women & Families vice president, during the conference.

But hospitals and providers are already bristling against their host of mandates -- including stage 1, which many are just wrapping up -- Steven Stack, M.D., American Medical Association board of trustees chair, said in reply to Bechtel. Once privacy and security issues surrounding EHRs are ironed out, he agreed that patients "should have access to whatever's in that record."

OpenNotes could help meaningful use compliance

Despite continuing questions about communication and data ownership, if the RWJF study sample is any indication of what would happen if OpenNotes were to be rolled out nationwide, meeting the meaningful use's 5% threshold wouldn't be a problem.

Long-term, I believe this will become the standard of care.

Kevin Tabb , CEO, Beth Israel Deaconess Medical Center

Using OpenNotes can create efficiencies, said Eileen Whalen, executive director of Harborview Medical Center in Seattle. In her case, she is helping manage the care of a sibling with cancer on the East Coast, and managing communication about his illness with eight other siblings. While her facility uses OpenNotes, her brother's does not. If it did, his caregivers would be a lot less busy answering emails from his nine brothers and sisters seeking updates, she said.

Whalen and Beth Israel Deaconess Medical Center (BIDMC) CEO Kevin Tabb, M.D., outlined business cases for their facilities incorporating OpenNotes: It can help promote patient safety through patients correcting misinformation in their records and physicians reinforcing education and clearer explanations of care plans; it forces more collaboration between patients and physicians; and it can drive quality through giving patients access to more of their health data and care plans between visits.

BIDMC's Janice Walker, R.N., co-author on the OpenNotes study, suggested another business case: It may even lead to fewer malpractice suits, because those usually begin with problems in communication between physicians and patients.

BIDMC will adopt OpenNotes permanently

Tabb announced at the panel that BIDMC would be rolling out OpenNotes to all patients now that the pilot program has drawn to a close. All care practitioners, not just physicians, will have their notes accessible by every patient with whom they interact. Tabb's convinced OpenNotes use will become widespread throughout U.S. health care; he said being the first health system in the crowded Boston market to implement it will give BIDMC a competitive edge.

"All [caregiver notes, not just physicians'] are important, and we're going to open all of that up, to all of our patients," Tabb said. "Long-term, I believe this will become the standard of care...and I just want us to get there first."

Geisinger Health System physician and study participant Richard Martin, said using OpenNotes not only inspired his patients to read and understand their health data, but to act on it. One patient, after seeing the "morbid obesity" diagnosis in his EHR, was offended and requested it be removed, even though it correctly described his health condition. A few more physician conversations later, the patient decided to get it expunged from his record the hard way -- by embarking on a weight-loss program.

Patient engagement helps medication adherence

BIDMC researcher Tom Delbanco, M.D., said that he's found when patients access their OpenNotes data and are reminded of what medications they're taking and why, it greatly improves adherence to prescriptions, too. Medication adherence is generally a tough problem to solve, he said, because physicians can't make patients follow their prescriptions. OpenNotes appears to be a self-policing tool for some patients.

Delbanco added OpenNotes can help patients understand more information about treatment plans for diseases such as chronic obstructive pulmonary  disease (COPD), which can also help them understand more about the meds they take and why to take them.

Specialists, too can benefit from implementing OpenNotes, said Mark Zeidel, M.D., BIDMC nephrologist and chief of medicine. Although he's convinced not every patient will be helped, the software could help promote quality-of-care and patient education programs. For example, research has shown that dialysis patients live longer when taught proper catheter care -- good information to port to OpenNotes. While he echoed the notion of other speakers that physicians will have to train themselves to enter notes in more understandable ways, they're not the only party who will have to change. EHR vendors, too, will have to get into the act, remaking their systems to create more narrative-based notes.

"Although [OpenNotes] works with every electronic medical record, many that are being bought and sold fragment the narrative of the doctor, and try to force the doctor to write notes that put numbers into boxes and diagnoses into boxes -- and don't allow for a coherent description of the patient's problem," Zeidel said. "If we're sharing the note with patients, they're not going to accept it. They're going to want notes that are narrative in format, that describe what's going on."

He called for researchers to create efficacy studies to determine how to maximize OpenNotes' use in clinical settings as clinicians use it on the job. "We do it, and study what occurs," Zeidel said. "We didn't spend a huge amount of time figuring out if penicillin was going to be good to treat pneumonia. We used it, and learned more about it as we went along, because it was clear that it was efficacious. That's where I think [OpenNotes] is headed."

Let us know what you think about the story; email Don Fluckinger, Features Writeror contact @DonFluckinger on Twitter.

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