Healthcare leaders are continuing to express their concerns about the changes that President Donald Trump’s administration is making to HHS. Just this week, 20 state attorneys general sued the administration, saying that the department’s restructuring plan and resulting layoffs are unconstitutional and dangerous for public safety.
Experts say the fallout from HHS’ overhaul could set public health efforts back by decades by dismantling critical infrastructure. It’s also important to note that these changes cast serious doubt on the future of interoperability, pointed out Jason Prestinario, CEO of data platform Particle Health.
The consolidation of HHS agencies and the lack of clarity around HHS-enforced interoperability policies like TEFCA and the Cures Act have created significant uncertainty, he said.
“We’ve had an outstanding information blocking request with the OIG now for almost a year, and we haven’t heard anything. As funding gets cut, that puts concern, certainly in our minds, around the future state of information blocking. Without information blocking having a real penalty, then the promises of TEFCA and information sharing generally won’t be realized,” Prestinario declared.
Particle filed its information blocking complaint with HHS’ Office of the National Coordinator for Health Information Technology (ONC) last July, and it was transferred to HHS’ Office of Inspector General (OIG) later that year. The complaint alleges that EHR giant Epic was blocking thousands of Particle customers from data.
The fact that Particle has received no communication or updates about its complaints suggests that interoperability enforcement may never have been a priority for HHS, and it may become even more deprioritized in the wake of budget cuts, Prestinario explained.
Lawmakers have also criticized HHS’ laissez faire approach to interoperability enforcement. Last July, Senator Bill Cassidy (R-Lousiana) urged the Biden administration to explain its delays in implementing and enforcing regulations to prevent health information blocking.
Prestinario noted that HHS’ lack of interoperability enforcement has real-world consequences for patient care.
He said that between March 21 and November 1 of last year, Epic blocked more than 18,000 of its customers from accessing clinical data shared through Particle’s network.
“Those blocked providers — Epic’s own customers, their own providers, their own doctors — did not get clinical information from the dozens of care organizations that we support, which includes maternal health-focused providers, rural-based EHRs and community oncology centers. Conclusively, 225,000 patients arrived at an appointment where their Epic provider was unable to see all of their medical records,” he stated.
Prestinario emphasized that delays and failures in data sharing can cause patient harm. Without full access to medical records, care teams make uninformed decisions, potentially missing vital context like past cancer treatments or lab results, he pointed out.
He offered a personal example of healthcare’s broken data sharing systems. Recently, Prestinario and his wife had to rush their newborn son to NYU Langone Health’s emergency department after they noticed he was presenting jaundice symptoms.
During this visit, a nurse had to take a photo of Prestinario’s phone showing his son’s lab results instead of retrieving the data electronically.
The newborn’s jaundice symptoms had been monitored by his pediatric care provider during the first week of his life, but the nursing team did not have ready access to that data, Prestinario explained.
While Prestinario remains hopeful about the future of interoperability, he warned that newer regulations like TEFCA and the Cures Act will have no effect without active enforcement. Without penalties, organizations will have no incentive to comply, he stated.
In a statement sent to MedCity News, an Epic spokesperson said that the company supports continuity of care for the patient.
“With this comes a responsibility to protect patient privacy — and to act when necessary to prevent the misuse of health data,” the spokesperson said. “For example, it’s inappropriate to use interoperability networks like Carequality to access patient data by claiming to provide treatment when the data is really being shared with class action lawyers, as that does not support continuity of care. Using clinical data in ways that do not benefit patient care undermines the trust that is essential for interoperability.”
The spokesperson said Epic will continue to defend itself against Particle’s allegations while upholding its commitment to patient privacy.
Photo: Natali_Mis, Getty Images
