HHS' big data-sharing decision

The ideas and innovators shaping health care

Jun 01, 2023 View in browser   By Ben Leonard, Erin Schumaker and Carmen Paun TECH MAZE 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.   DON’T MISS POLITICO’S HEALTH CARE SUMMIT: The Covid-19 pandemic helped spur innovation in health care, from the wide adoption of telemedicine, health apps and online pharmacies to mRNA vaccines. But what will the next health care innovations look like? Join POLITICO on Wednesday June 7 for our Health Care Summit to explore how tech and innovation are transforming care and the challenges ahead for access and delivery in the United States. REGISTER NOW.     WELCOME TO FUTURE PULSE Damariscotta, Maine | Shawn Zeller This is where we explore the ideas and innovators shaping health care. Some good news: Volunteering is associated with better mental health for kids and adolescents, new research published in JAMA Network Open found. Share any thoughts, news, tips and feedback with Ben Leonard at bleonard@politico.com, Ruth Reader at rreader@politico.com, Carmen Paun at cpaun@politico.com or Erin Schumaker at eschumaker@politico.com. Send tips securely through SecureDrop, Signal, Telegram or WhatsApp. Today on our Pulse Check podcast, your host Carmen talks with Robert King about why doctors and hospitals are frustrated with the challenges they encounter as they try to collaborate with the Biden administration on finding new cost-saving measures for Medicare. Listen to today’s Pulse Check podcast DANGER ZONE 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.   GET READY FOR GLOBAL TECH DAY: Join POLITICO Live as we launch our first Global Tech Day alongside London Tech Week on Thursday, June 15. Register now for continuing updates and to be a part of this momentous and program-packed day! From the blockchain, to AI, and autonomous vehicles, technology is changing how power is exercised around the world, so who will write the rules? REGISTER HERE.     FORWARD THINKING 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.   Follow us on Twitter Ben Leonard @_BenLeonard_ Ruth Reader @RuthReader Carmen Paun @carmenpaun Erin Schumaker @erinlschumaker   Follow us

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