The dispute about delivering bad medical news

Doctors are at odds with some patient advocates and HHS over a congressional directive aimed at ensuring patients get their medical test results as soon as they’re ready.

The physicians say their patients are getting bad news via patient portals before they can explain them since HHS mandated the immediate disclosure of results, implementing a provision in the 21st Century Cures Act that bars providers from restricting patients’ access to their medical information.

Doctors and the American Medical Association, which represents physicians, say that:

— Patients are getting news about terminal illness or confusing test results. “We’re seeing a parent who finds out at nine o’clock on a Friday night when they can’t reach anybody that their child’s leukemia has recurred,” AMA President Jack Resneck told Ben.

— Doctors say they need leeway to hold back information if an immediate release would cause “mental or emotional harm,” pointing to survey data the AMA commissioned showing close to two-thirds of patients want their doctor to talk them through “life-changing” results. “We’re just asking for a little flexibility for a few hours or a few days when there’s bad news to be able to deliver it by phone or in person and to be able to more personally deliver that bad news,” Resneck said. “What we’re talking about is very rare, less than 1 percent of cases.”

Some patient advocates argue that could do more harm than good because:

— The HHS rule already allows patients to decide whether they want their test results immediately.

— “That test result may be what someone needs in order to search for a clinical trial, an emergency second opinion, for a Social Security disability application or to connect with necessary community supports,” said Grace Cordovano, a board-certified patient advocate.

— “The regulations do not prevent a physician from having a conversation with their patients when they are ordering particular tests, telling them about the fact that they might get their results in advance of the doctor seeing them,” Genevieve Morris, a former top HHS official and now senior director of interoperability strategy at health IT firm Change Healthcare, said.

— Many patients might not have good relationships with their doctors, Morris said, which can affect “whether a patient wants to hear bad news from them or from a computer screen.”

Tech roadblocks: Resneck said not every system can separate patients who want their results before consulting with their doctor from those who don’t.

HHS National Coordinator for Health Information Technology Micky Tripathi expects the market to fix that.

“It’s absolutely the case that the electronic health record vendors don’t uniformly have the ability to [let patients decide if they want results delayed]Tripathi said. “But that’s what demand and supply is all about. Right now, the demand is there. We would expect now the response from the supply side.”

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Today on our
pulse check
podcast: Ben talks with Lauren Gardner about the debate over HHS’ directive requiring doctors to send patients’ test results before they have a chance to explain them.

Researchers are making progress in understanding eye diseases like age-related macular degeneration with 3D printing.

Scientists affiliated with the National Institutes of Health reported last month they’d used stem cells and 3D printing to grow eye tissue.

Specifically, the researchers:

— Printed eye tissue that supports light-sensing photoreceptors in the eye

— Manipulated the tissue to create disease phenotypes in a process that could be used to test potential drug treatments

The goal is to be able to study diseases in a dish by printing cells and the genetics they contain.

“So you could create these tissues in high quantity and quality, and test hundreds, perhaps thousands of drugs, and find the right candidates that would work directly on patient cells,” Kapil Bharti, who heads the National Eye Institute’s Ocular and Stem Cell Translational Research Section, told Ben.

Challenges remain: Printing in bulk is still pricey, Bharti said.

“If I were to make 100 tissues in a day, it would become extremely expensive,” said Bharti. “As an academic government institute, that’s not something we would routinely do. But pharma could easily invest in such technologies and make hundreds and literally thousands of tissues a day.”

Researchers are also trying to miniaturize tissue to reduce the cost and make it easier to scale, he said.

Growing momentum: Researchers have made strides using bioprinting with the goal of developing hearts and kidneys that could end the wait for organ transplants.

Should doctors bill patients when they respond to electronic messages from them?

That became an issue during the Covid pandemic, as patients with lots of questions sought ways to communicate quickly with their physicians.

Doctors said it added hours of unpaid work every day.

The University of California, San Francisco, health system decided to bill patients for some messages sent over patient portals that required medical decision-making and doctor time. After implementing a system warning patients they might be billed and letting clinicians determine which visits were billable, UCSF found:

Patients’ messaging fell by a small amount.

— Doctors were reluctant to send bills. They billed only 2 percent of message threads.

A Jay Holmgren, an assistant professor of medicine at UCSF who led a study of the billing experiment, told Ben that the findings show it’s difficult to change providers’ behavior, especially since it requires them to track their messaging time.

As their messaging declined, patients didn’t call more often or schedule more visits, the researchers found, suggesting “some of those messages were low-importance,” Holmgren said.

What’s next: Holmgren said he’d like further research on whether reduced messaging had any negative impact on patient health.

“We’re still in the very early stages of billing for messaging, but this will be a crucial test of how our payment system accommodates new modalities of care that require clinician time but don’t fit well into the “episodic, discrete task” framework of fee-for-service outpatient care,” he said.

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