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Several physician groups are trying to change a new federal law they believe gives them no choice but to post bad news on their patients' electronic health portals before doctors have the chance to inform or discuss results with their patients. They're concerned that a confirmed diagnosis -- without context or treatment options -- will send their patients into avoidable emotional despair, or worse.

But those doctors are overlooking a simple solution that's embedded in the new law.

The Office of the National Coordinator (ONC) confirmed Thursday, in response to a MedPage Today request, that doctors can simply ask their patients in advance if they want the results withheld until the doctor can deliver the results directly, with delayed posting electronically. If the patient agrees, the doctor is not in danger of violating the rule.

"In scenarios where a patient does not want the result until they've spoken with the doctor, the is available and allows a patient to request their EHI [electronic health information] not be shared electronically, including to their own patient portal," said an email from an ONC spokesman.

"In that case, the results could be delivered via a discussion with the doctor," and not violate the Information Blocking rule. The spokesman said that ONC is aware of the concerns "raised by some providers and their trade associations."

The key is that the physician and the patient need to have a conversation about this from the start.

Culture Shock

The rule, contained in the , took effect April 5 and has been a culture change -- some say it's been a culture shock -- for physician practices that have held back test results or imaging studies until they were ready or had found the time to counsel their patient, and some never bothered to share at all. The new rule requires the posting of of health information as soon as they are electronically available to the patient's health portal.

Its purpose is to change the philosophy guiding the physician-patient relationship to enable patients to access, exchange, and use -- and perhaps amend or correct errors -- in their own health information by making it accessible electronically. An ONC spokesman said in an email that since the rule took effect, many clinicians said their patients value having this information in a timely fashion.

"It is well known that patients experience delays in receiving their test results, leaving them without actionable information related to their care," the spokesman wrote.

Nevertheless, several physicians and their trade groups have loudly blasted the rule for language they think gives doctors no other option but to send those electronic test results and summaries immediately, or else be in violation of the law and subject to "disincentives," which are expected to be defined in federal rulemaking in coming months.

Bad News at 2 a.m.

"I don't want my patients reading a CT report showing brain metastasis at 2 a.m. all alone," said Barbara McAneny, MD, an oncologist in Albuquerque and past president of the American Medical Association.

"I prefer to give bad news when I am holding their hand explaining what can be done," she said. "I have had patients who read the CT report with 'hypodense lesions' in their liver and cry all night thinking their cancer is back, because they don't know people get benign cysts in the liver."

Physicians say they are concerned about the emotional impact on their patients who read these reports without the physician there to explain the context. They may not understand them, misconstrue their significance, or don't know that there are multiple treatment options available. Without knowing options, they may sink into depression or a suicidal state of despair.

In an Aug. 3 to ONC leader Micky Tripathy, Jerry Penso, President and CEO of the AMGA, which represents 450 multispecialty medical groups and integrated delivery systems, wrote that the rule is "causing patient harm, hindering effective communication between patients and their care providers, and complicating care coordination efforts."

It asks the ONC to expand the definition of harm to include emotional distress, and allow providers to "hold select results secret for 24 to 72 hours to deliver them in a more compassionate way."

The AMGA letter gave several examples in which patients got terrible news: a patient was alerted by the portal that he was diagnosed with Huntington's disease; another learned of a miscarriage by phone before the doctor had reviewed the results; patients routinely receiving results that confirm a cancer diagnosis; and patients seeing positive test results for infectious diseases such as HIV before their doctor.

Rick Bone, MD, senior medical director of population health for Advocate Medical Group in Chicago and Milwaukee, which implemented electronic information sharing 2 years ago for its 3,600 physicians, supports the main reasons for the rule, to give patients information electronically as soon as it's available.

But on a personal level, Bone, who also chairs the AMGA Leadership Council, said he took it surprisingly hard when he saw his metastatic prostate cancer diagnosis in an electronic record before his doctor had reviewed it with him.

I would have felt much better if I'd heard the news from my doctor first, instead of the online health portal, he said. "Even though I knew that was probably going to be the diagnosis when I had the biopsy, when I saw the biopsy, there was some sort of non-brain-related gut reaction. That was pretty bad just for me, and I'm a doctor and I know what's going on."

When told of the clarification from the ONC, McAneny replied, "That is helpful ... We will start getting this added to our consents." She had heard that a previous ONC response was "kindness [to your patient] is not an excuse" that allowed for a delay, which could not be confirmed.

AMGA was asked to comment on the ONC clarification -- that posting results immediately on a patient's electronic portal is not their only option -- but did not respond by press time.

Some of the confusion about the new rule may in fact come from some advisories from ONC that suggest patients have the ability to just use self control, and avoid looking at their portal, and instead wait for the doctor's call.

"A patient could simply choose not to review the results on the portal until they have spoken with their physician. Both support the underlying purpose of the information blocking regulations, which is that a patient's EHI belongs to them and should be accessible to them when and where they want it," according to an ONC spokesperson.

Related stories about the Open Notes rule:

Open Notes Shines Light on Errors in Patient Medical Records

Patients Can Get Medical Records Amended, but It's Not Easy

Is the 'Open Notes' Rule as Good in Practice as It Is in Theory?

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