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New Rule Giving Patients More Access to Medical Record May Cause Confusion, Worry

Patti Singer

A federal regulation meant to give patients faster access to test results could have unintended consequences if those results end up causing fear and worry because a doctor has not yet had the time to explain what they mean.

The ruling covers Rochester Regional’s MyCare and UR Medicine’s MyChart. As of Nov. 2 both patient portals will have to post results of all tests, including sensitive ones such that may mean a diagnosis of cancer or other serious condition.

Patients already can get results of some tests, as well as read the notes the doctor made of the visit. But this expansion covers MRI and other imaging and pathology, meaning patients have fuller access to their medical records even if they don’t understand what that information means.

Medical officers from both systems on Oct. 9 held a news conference to explain the change – that the information will come to the patient and doctor at the same time. However, patients can opt out of seeing the results until their doctor had the opportunity to talk with them.

“Right now, we hold it back for a certain period of time to assure that the provider is able to talk to you and let you know what the results mean and what the plans are,” said Dr. Michael Apostolakos, chief medical officer at UR Medicine’s Strong Memorial and Highland hospitals.

The change is part of the 21st Century Cures Act, which was passed in 2016 and like many laws, is phased in over time. Initially, it required that progress notes and other parts of patient care be accessible to the individual without them asking. There still are exceptions, but the idea behind the openness is to “deliver better information, more conveniently, to patients and their health care providers,” according to the federal Office of the National Coordinator for Health Information Technology.

Provisions of the Cures Act are part of the movement toward patient-centered care, which is supposed to allow individuals to make choices about their care based on cost and outcomes and give them the necessary information in a way most convenient to them.

However, cost transparency really doesn’t exist in health care. Therefore, most efforts at openness seem to be at telling patients about their care and conditions – information that is rightfully theirs anyway but has been shielded because of longstanding paternalism.

While patients are getting more say over their care, their ability to understand the information in their records and place it in context has been an issue since the start of open notes – as the practice is called. The information often is written in medical terms and the context may be missing.

“We’re not asking patients to interpret their medical information,” said Dr. Robert Mayo, chief medical officer at Rochester Regional Health. “You may have access to it and we as providers want to have a full dialogue with you about it. …”

He said he anticipated a learning curve as providers and patients adjust to the new flow of information and find the best way to use it.

Apostolakos and Mayo said that patients can talk with their providers about how much information they want to receive in their portal.