As the Trump Administration and States Push Health Data Sharing, Familiar Challenges Surface

The Northeast Valley Health Corp. in Los Angeles County could be a poster child for the benefits of sharing health data electronically.

Through a data network connecting its records system with other providers, the health center receives not just X-ray and lab results but real-time alerts when hospitals on the network admit or discharge its patients who have diabetes or asthma, enabling care teams to troubleshoot and significantly drive down emergency room visits.

But Christine Park, the community health center’s chief medical officer, said that even with those achievements, data sharing is far from seamless: The hospitals visited by the center’s patients aren’t all on the same network, and it’s often necessary to exchange records via fax.

“You know the patient went there, and you know there’s got to be a note,” Park said, “but you keep bumping up against that glass door.”

Despite billions of tax dollars and two decades of effort invested in improving health care data sharing, health advocates say, Americans’ medical records often remain siloed, leading to duplicate testing, increased costs, and wasted time for patients and care teams. And as the Trump administration and lawmakers from several states aim to bolster health data sharing, they face financial and operational hurdles that have stymied previous efforts.

Further complicating these efforts is whether providers and other stakeholders — facing the prospect of reduced Medicaid revenue after the passage of President Donald Trump’s major tax-and-spending law this summer — will invest the time and money needed to improve data sharing. And in some states, lawmakers and privacy advocates have heightened concerns about information sharing because of instances in which patient data has been used by immigration and law enforcement agencies.

In July, the Trump administration launched a voluntary, tech-focused initiative aimed at modernizing health data sharing and giving patients better access to their information. The Centers for Medicare & Medicaid Services announced that over 60 technology and health care companies had pledged to “kill the clipboard.” Health data networks and digital health records systems agreed to follow common information-sharing rules, providers pledged to share data through these networks, and tech companies agreed to enable patients to pull their data from these networks or apps.

Some executives in the health tech industry applauded the focus on patient access, while skeptics questioned whether the voluntary plan would sufficiently motivate health care providers to participate.

“There’s not really a carrot here,” said venture capitalist Bob Kocher, who was a health official in the Obama administration.

Previous initiatives have run into data sharing’s bleak economics for providers: It requires investment and carries risks given privacy and security issues, and the financial return is often limited.

Most providers are paid primarily for the volume of services they render, limiting the incentive to share data and reduce unnecessary care, despite years of federal and state efforts to move toward a system that rewards providers financially for improving health outcomes. And health systems, Kocher said, can lose patients to business rivals when they share data.

In a statement, Amy Gleason, a strategic adviser to CMS, acknowledged that data sharing requires investment and that “some providers face financial pressures.” She added that CMS uses all available levers to encourage health care providers to share data, including testing new payment models. New federal initiatives are also aimed at enforcing regulations requiring prompt sharing of records and at improving data sharing in rural areas.

The federal government has long tried to streamline the sharing of health records. After the passage of the 2009 Health Information Technology for Economic and Clinical Health Act — or HITECH Act — during the Obama administration, federal subsidies were used successfully to push most hospitals and doctors to adopt electronic health records and to get most states to establish or enable a type of data network known as a health information exchange.

Subsequent administrations worked to make these systems more interoperable. The first Trump administration required providers to promptly share electronic records with patients and other providers, and the Biden administration stood up a national infrastructure to connect national, state-level, and other types of data networks.

But hospitals with fewer resources struggle with sharing data, and federal health IT efforts have historically left out many behavioral health and long-term care providers, said Julia Adler-Milstein, a professor of medicine at the University of California-San Francisco. Many doctors, especially those who treat underserved patients, find accessing information on health record systems other than their own difficult. Patients, too, struggle to consolidate their records.

States have forged ahead with medical data sharing in myriad ways, some using monetary incentives or, less frequently, penalties to get providers to share data with their exchanges.

Melissa Kotrys, chief executive of Contexture, the state-designated health information exchange in Arizona and Colorado, said most hospitals in both states connect to the exchange. To encourage participation, Arizona offers annual Medicaid incentives to providers that join and achieve specific milestones, while Colorado offers incentives to rural providers.

For many years, New York state — which requires hospitals, nursing homes, and other providers regulated by the state to join a regional network — offset the initial fees with federal support. The state continues to fund the platform that connects them, also with the U.S. government’s support. All hospitals in the state participate.

This year, lawmakers in at least seven states introduced bills largely aimed at enhancing digital record sharing and bolstering privacy protections, according to Alan Katz, a policy leader at Civitas Networks for Health, a national group representing health information exchanges. Some of these bills, like Michigan’s, propose expanding the capabilities of already robust, existing exchanges.

In California, Democratic state Sen. Caroline Menjivar authored legislation that would lay groundwork for the state to better enforce its 2021 mandate that health care organizations share health and social services data in real time.

Supporters say the state needs more enforcement authority to ensure compliance and to support priorities such as better integrating health care and social services.

“I wouldn’t say this is the last step by any means, but it’s a necessary next step,” said Timi Leslie, executive director of Connecting for Better Health, the nonprofit that sponsored the bill, SB 660.

Amid the Trump administration’s restrictive stance on transgender care and reports that health agencies are sharing patient data with deportation officials, the bill would exempt data on gender-affirming care and immigration status, as well as other sensitive information, from being shared.

The California Hospital Association opposes the bill, saying in a letter to the state Assembly that it would impose enforcement and costs on hospitals at a time when they face federal and state cuts.

Claudia Williams, a former health information exchange leader, said she doubts the bill can drive meaningful data sharing without providing ongoing funding for incentives and infrastructure.

In a statement, Menjivar said the state had already granted $50 million to hospitals and other organizations to help them meet the mandate’s requirements and has invested meaningfully in technology upgrades. The bill passed both chambers and is on its way to the governor for approval.

There’s broad agreement amid the numerous federal and state efforts to improve health record sharing that the endpoint should be data being at the right place at the right time, said UCSF’s Adler-Milstein. “But the actual process of getting an entire health care system’s IT, incentives, and policies to align behind that is extremely hard.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.