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'Privacy Exception' No Cure for Doctors' Open Notes Headaches

— Provision is "unworkable," harms patients, and adds to clinical stress, doctors say

MedpageToday
An out of focus male physician, hand on his chin, thinking in front of his laptop.

Some physicians are bridling at last week's federal advisory suggesting they can delay releasing bad news to patients' electronic health portals without violating the new federal law that requires it. Their patients just have to request the delay up front.

The framework for doing that is embedded in the "," one of eight exceptions in the new or "Open Notes" rule. This one allows "" (i.e., clinicians) to withhold releasing health information to a patient if that release could harm the patient, according to a spokesman for the Office of the National Coordinator for Health Information Technology (ONC), which is administering the rule.

According to the ONC's , "sub-exception e" specifies that the clinician would not be violating the rule if "the individual (patient) requests that the actor not provide such access, exchange, or use of electronic health information," and if the clinician did not improperly encourage or induce the patient to make that request.

The Information Blocking rule, which took effect April 5, requires physicians and other providers to make electronic records in 16 categories -- from visit notes and imaging studies to lab reports -- available on the patient's health portal as soon as they are available. The law is intended to reinforce the patient's right to their own health information promptly and electronically so they can make decisions about their follow-up care, schedule appointments, and arrange for family assistance without waiting days to weeks for another appointment or the doctor's call.

But the American Medical Association (AMA) and the AMGA, which represents 450 multispecialty groups, object to the plausibility of tailoring release of medical records to each patient and to each of of records the rule requires.

The ONC "is making assumptions that healthcare systems, physician practices, and electronic health record vendors have the technology, processes, or workflows to accommodate their regulations. They do not," said AMA President-elect Jack Resneck Jr., MD.

"For instance, many EHR systems do not accommodate a privacy exemption that would allow physicians to hold specific information per a patient's request. The technology is currently not capable of doing what ONC suggests physicians should do," he said.

"Because of ONC's lack of forethought, patients are being harmed and physicians are being put in ethical dilemmas -- causing thousands of physicians to themselves be emotionally harmed, with increased stress and burnout," Resneck argued.

In a from AMGA president and CEO Jerry Penso to Micky Tripathi, PhD, MPP, the ONC's national coordinator for health IT, Penso said that medical groups want the rule amended to give them the ability to wait between 24 and 72 hours after the electronic records are available.

The rule goes beyond supporting the concept of sharing information, the AMGA letter said. Instead, it confuses the doctor-patient relationship, especially with examples in which a patient is informed on his or her portal that she has Huntington's disease, or a patient learned of a miscarriage via a phone alert before the physician had reviewed the results, or a patient who learns they have HIV by reading a lab report.

Ted Mazer, MD, former president of the California Medical Association, supports the idea that patients have a right to prompt and accurate information about their health status. But he was critical of the idea that doctors would have to reach out to each patient for consent to automatically hold each type of health record on the electronic portal.

He said it's "insane" that physicians can tailor their electronic health records to each patient's wish and "put another requirement on the doctor," said Mazer, a semi-retired otolaryngologist in San Diego. It's "an unworkable option put forth by autocrats running a medical system who have no concept of how it operates and what the interpersonal relationships are within medicine."

ONC "just puts out edicts that they think are wonderful, but they've never modeled, piloted, or tried to see whether that would be successful or harmful," Mazer said. "You want to have the doctor have yet another time-consuming discussion with the patient every time they order a laboratory?"

The new rule, which is part of the 21st Century Cures Act Final Rule, requires that clinicians no longer wait for a discussion to release results to patients. Delaying the release of lab reports or visit notes, or not releasing them at all, has been the practice by many physicians who regard the patient's information as the property of the practice. Or, they felt that the doctor should convey information rather than have the patient read records without a complete understanding of medical jargon or the implications for their health.

In response to the criticism, an ONC spokesman replied that the law was passed in 2016, with a 3-year rule-making process, and then a delay before it took effect, implying that clinicians have had enough time to prepare.

The spokesman added that, "When it comes to complying with the law's information sharing expectations, the Cures Act Final Rule's 'information blocking exceptions' are intentionally flexible and allow clinicians to choose the technologies and processes that can best fit their workflows and the patients they serve."

In other words, the rule's exceptions are flexible.

Federal rulemaking has not yet determined what the penalties for information blocking will be or when formal accusations will begin, except to say that rulemaking will specify "disincentives" after a determination by the Health and Human Services Office of Inspector General's investigation that a doctor blocked information the patient was entitled to have.

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    Cheryl Clark has been a medical & science journalist for more than three decades.