HHS' big data-sharing decision

From: POLITICO Future Pulse - Thursday Jun 01,2023 06:02 pm
The ideas and innovators shaping health care
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Future Pulse

By Ben Leonard, Erin Schumaker and Carmen Paun

TECH MAZE

A patient and doctor are pictured.

An HHS project aims to make it easier to share patient records. | Getty Images

HHS has a big decision to make about who will manage a key patient health data-sharing initiative, and is keeping an open mind about what kind of vendor it hires.

Kevin Eike, a spokesperson for HHS’ Office of the National Coordinator for Health Information Technology, said the solicitation is “intentionally silent” on whether the agency prefers a nonprofit organization or for-profit company — in order to maximize competition.

Why it matters: The 21st Century Cures Act — enacted in 2016 — called on the Department of Health and Human Services to create a system that would speed and secure the sharing of patient health data. HHS put out a first draft of the framework in January 2018 and finalized it in January 2022.

But there is still more work to do to get the project up and running.

Currently, the Trusted Exchange Framework and Common Agreement is managed by the nonprofit Sequoia Project, which won a four-year deal to run it in 2019.

Under TEFCA, organizations can become qualified networks — which allows them to share patient health data — by signing a data-sharing agreement and adopting necessary infrastructure.

The initiative also aims to expedite data sharing among health care organizations and accelerate public health agencies’ information exchange with doctors, hospitals and other health care organizations.

What’s next: ONC will take proposals until June 27 and select the next coordinator in time to begin in September.

Sequoia Project CEO Mariann Yeager told Ben she's proud of her group's work and is applying again to continue managing the initiative.

 

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DANGER ZONE

A man injects a shot of heroin near a heroin encampmentin the Kensington neighborhood of Philadelphia, Pennsylvania, on April 14, 2017.In North Philadelphia, railroad gulch as it is known, is ground zero in Philadelphia's opioid epidemic. At the camp, and throughout the nearby area, a user can buy a bag of high-grade heroin at a low price and even pay to have another person inject them if for any reason they are unable to inject themselves. For several individuals, the addiction process was a slow one that started with a doctor's prescription for pain pills after an accident or surgery, and by the time the medication was finished, a dependency was born. After seeking black-market pills to feed their addiction, the simple economics of heroin won out: the price of a single pill could fetch anywhere between 2 and 10 bags of heroin, a savings that's hard to ignore when an insurance company is no longer underwriting the cost. / AFP PHOTO / DOMINICK REUTER (Photo credit should read DOMINICK REUTER/AFP via Getty Images)

Many people who use heroin are getting fentanyl with it. | AFP via Getty Images

“I used to tell my boy, ‘Listen, I don’t want that crap. I want fentanyl.’ And he’s like, ‘I don’t want to give that to you.’ And I’m like, ‘You have to give it to me.’”

– Alicia

Fewer than 1 in 5 New Yorkers surveyed about their drug use reported using fentanyl intentionally, but more than 4 in 5 tested positive for the potent opioid.

That’s according to new research from New York University’s School of Global Public Health.

The researchers surveyed and gave toxicology tests to 313 people who injected drugs.

Alicia, a study participant in her 40s, said she developed a preference for fentanyl over six years, when she repeatedly injected herself with heroin she didn’t know was mixed with fentanyl.

Key finding: People who unknowingly use fentanyl may inadvertently develop a tolerance for it. That might contribute to an increase in fentanyl use and overdoses, the researchers said.

Alicia’s experience might be more common than previously realized, the researchers wrote, “given that heroin and fentanyl are usually mixed together but are typically sold as heroin.”

At a glance: 

— Overdose deaths in the U.S. began accelerating in 2015, largely driven by fentanyl. Centers for Disease Control and Prevention data released last month shows that the rate of fentanyl overdoses rose 279 percent between 2016 and 2021.

— Black Americans died at much higher rates from fentanyl overdoses in 2021 than white or Hispanic Americans.

— Study participants who intentionally used fentanyl were more likely to be young, white or both; to have used drugs more frequently; to have used stimulants; and had recently overdosed than those who said they were trying to avoid fentanyl.

 

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FORWARD THINKING

A patient is pictured receiving kidney dialysis treatment. | AP Photo

Some in Congress want to move dialysis treatment to the home. | AP Photo

Doctors are diagnosing chronic kidney disease earlier than ever, offering hope of helping people avert severe cases.

Researchers at the electronic health records firm Epic identified the shift and credit it to a change in how doctors measure kidney function and a 2019 executive order by then-President Donald Trump aimed at boosting preventive care and encouraging more treatment at home.

How so? The Trump order incentivized early detection by revising government payment models to reward doctors who catch disease earlier.

CMS, under the Trump administration, also moved to expand payment for treatment and test new payment models.

And in 2021, a task force made up of members of the National Kidney Foundation and the American Society of Nephrology changed how doctors measure kidney function.

In the past, the metric may have inflated how well Black patients’ kidneys were working, understating the presence or the severity of disease.

That’s helped catch more cases earlier, especially among Black patients, the researchers wrote.

Why it matters: The CDC estimates 37 million American adults have chronic kidney disease. But close to half of people with severely diminished kidney function who aren’t on dialysis — which removes waste and excess fluid in people with improperly functioning kidneys — don’t know they have the disease.

The costs are significant: Treating Medicare patients with kidney disease cost $87 billion in 2019.

In Congress, meanwhile, lawmakers are looking for ways to bring more care into the home, including dialysis, in a bid to reduce Medicare costs.

 

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