Momentum returns for health information exchanges

A few years ago, health information exchanges faced yawning obsolescence. Now the COVID-19 pandemic has rocketed these information-sharing networks back to relevancy.

The pandemic transformed the perception of HIEs and fostered an appreciation of their value, spotlighting the importance of sharing population-level data quickly, with HIEs across the country crunching data to answer hospital capacity questions, predict the virus’ spread and, now, determine vaccine allocation and eligibility.

While HIEs have always been helpful for solving immediate and unexpected care concerns related to natural disasters or flu outbreaks, the increasing number of value-based relationships, a laser focus on the social determinants of health and HIEs’ 2020 moment in the sun have offered the shot in the arm some say was needed.

The HIE revival raised a few old questions surrounding these systems. Namely, what business model helps them achieve sustainability? When it comes to interoperability, which is preferred: point-to-point solutions that are more efficient, or hub-and-spoke models that are more realistic?

“COVID has had a big impact on perception and brand,” said Claudia Williams, CEO of Manifest MedEx, a statewide health information system in California. “If you think about trying to create a layer of the healthcare stack that we don’t compete over, and if you look at interoperability in a broader sense of, ‘What does the country need for healthcare data interoperability?’ you absolutely need an intermediary and you probably need an intermediary with some normalized data repository.”

This debate has come to a head in California, where Manifest MedEx advocates are calling on legislators to incentivize and mandate provider and payer participation in the network, foster a stronger connection with the state, and increase public funding in the exchange.

Proponents want the California HIE to operate as a public data utility, or a not-for-profit that connects and coordinates the activities of the state’s many disjointed regional exchanges to solve public health needs. But providers like Kaiser Permanente are questioning the necessity of building out yet another tool to exchange patient data.

“It’s public health, it’s equity, it’s Medicaid transformation, it’s improving healthcare value in the state. I don’t think anyone can argue that this infrastructure isn’t needed to do that,” said Williams, who served as a senior adviser for health technology and innovation to the White House during the Obama administration and was also director of health information exchange at HHS.

“We’re at the extreme in HIEs in our earnings, our approach,” said Indiana Health Information Exchange CEO John Kansky.

The not-for-profit organization connects 50,000 healthcare industry players, saying its members represent the largest and broadest participant community in the nation.

Like most HIEs, the 17-year-old exchange got its start connecting hospital data from one system to another. But as the healthcare industry became more fragmented, Kansky said IHIE expanded its offerings to connect players across the healthcare community—from labs to public health departments to health plans. The organization divides its services into three general customers: doctors serving individual patients, population health customers and government clients.

Each IHIE participant pays a subscription fee to connect to its data repository. The not-for-profit does occasionally receive federal grant funding,  but Kansky said the vast majority of IHIE’s cash comes from subscription fees participants pay into the system, along with money from customized projects members request. Unlike most exchanges, IHIE does not rely on federal or state funding to subsidize its operations.

“We never want to be dependent on handouts,” Kansky said.

The upside to this business model is that “it’s on you to run your business and know what your customer wants and deliver those services effectively,” Kansky said. The downside is that not every project IHIE would like to do offers a concrete business case, particularly when it comes to public health.

At the opposite end of the spectrum lies New York, a state dotted with regional health information exchanges, called RHIOs, that are mostly funded through state and federal cash. While most HIEs rely on more than one funding mechanism, which dictates much of their business operations, New York’s state legislature has laws around the essential services that its RHIOs must provide for free. At the Rochester RHIO, for example, 75% of its funding comes from the state; the rest comes from specialty projects its participants request. These regional systems connect into a single, statewide system called the New York eHealth Collaborative, or NYeC, which coordinates and supports their independent operations. While some have pointed to the many regional systems’ local ties as helping to drive trust among providers, the state’s patient-data sharing laws have kept these health information systems from operating at their full capacity, said Adam Block, a New York-based health economist and former CMS regulator. New York has some of the strictest privacy laws in the nation.

“It’s sort of like Facebook,” Block said. “Facebook gets its value from the fact that it’s one centralized repository that everybody’s on. If all of a sudden, only 20% of the people are on it, you’re not going to go to Facebook so quickly to look somebody up.”

Because patients patients must actively consent for their providers to access their information in New York’s RHIOs, and the task of gaining consent often falls on overworked providers, Block said RHIOs don’t offer the comprehensive, population-level data needed.

But Lisa Bari, interim CEO of the Strategic Health Information Exchange Collaborative, an industry group that represents HIEs including New York’s RHIOs, called the assertion that the state's HIEs don’t have a meaningful impact on population health “overly broad.”

“The idea that they don’t have meaningful population health data, can’t work in the space, and can’t work in public health, is simply not accurate,” she said.

And with consolidation among providers driving the use of a single electronic health records system across clinicians, Block said demand for HIEs has dropped in recent years. While he admitted the pandemic spotlighted the benefit of a public data utility, he said providers directly transmitting data to other hospitals or government agencies offers a more efficient approach to interoperability than an HIE.

“It accomplishes the same task without having a middle person,” Block said.

California’s HIE landscape lies between the two extremes of New York and Indiana.

Manifest MedEx, which operates as a not-for-profit, represents one of the country’s largest networks, combining records for 26 million residents from more than 120 hospitals, health plans and 1,000 ambulatory providers.

Manifest MedEx receives subscription fees from both health systems and health plans—though according to its tax forms a significant amount comes from insurers—as well as grant funding and other support from state and federal sources. Williams said its revenue is roughly divided into thirds.

In addition to Manifest MedEx, regional health information exchanges are spread around California’s healthcare system. The varied network is a reflection of differing provider perspectives in the diverse state. In San Francisco, for example, previous attempts at spinning up an HIE snagged after competing providers couldn’t overcome their trust issues regarding patient data.

The pandemic has heightened the argument for connecting—or at least coordinating—these fractured, regional systems into a single network.

In January, Gov. Gavin Newsom submitted a $227 billion budget proposal to the state Legislature that included provisions to integrate data from the state’s Medicaid program, health insurance marketplace and healthcare and retirement benefit program into Manifest MedEx. At the statehouse in Sacramento, Rep. Jim Wood, a Democrat, held a three-hour hearing in late March, in which a new coalition emerged to extol the benefits of a stronger statewide HIE, while opponents like Kaiser Permanente questioned the investment necessity.

“Gaps in data sharing are not due to a lack of local HIE organizations,” Dr. Walter Suarez, Kaiser’s executive director of health information technology, strategy and policy, said during the hearing.

He noted that Kaiser, which operates a robust internal EHR system, shared patient data with more than 2,600 providers outside its system in 2020, much more than the existing regional and national HIE networks. Kaiser Permanente declined to comment for this article.

The integrated health system interacts with Manifest MedEx but not being a full partner, does not share data with every regional system. During the hearing, Suarez blamed a lack of interoperability across the state to spotty technical capabilities among providers, closed EHR systems and a lack of affordable broadband access.

“Regional HIE organizations cannot really address those more foundational challenges,” Suarez said.

He pointed to several state and federal initiatives already underway that he believes will connect California’s disjointed information sharing infrastructure.

California will soon launch an all-payer claims database that policymakers can use to crunch data about health disparities, Suarez said. And with new federal regulations around information-blocking, application programming interfaces and HL7 data transfer standards either already live or set to go live by the end of the year, Suarez said he expected health information to flow faster than ever across California.

“The obstacles to true statewide and national health information exchange are not mysterious,” Suarez said. “We need to invest in the so-called last mile to enhance the connectivity of all providers.”

But others at the hearing questioned if the systems Suarez described enabled interoperability simply between providers, or at a broader level across health plans, governments, public health departments and more. If California wants to achieve interoperability at the scale of systems in Indiana, New York and elsewhere, the state needs a central entity to normalize and organize the data, they said.

Operating under a coalition named Connecting for Better Health, proponents called for the state to provide sustainable funding for Manifest MedEx, along with a mandate and incentives for all health plans and providers in California to join the system. Their work is part of a new, larger movement—called the Consortium for State and Regional Interoperability—that aims to create statewide public data utilities in every state.

“We’ve studied this enough. Now we need to act,” Williams said. “I get that this may be disruptive. What I care about is the patient. What I care about is that we’re actually delivering better care for patients. If we all focus on that goal, we can manage through the competitive challenges and changes.”

This article has been edited because it had incorrectly stated that Blue Shield of California had invested $100 million in an initiative to scale Manifest MedEx. The story has also been updated to clarify that Kaiser Permanente does not pay to participate in the Manifest MedEx network and that New York's RHIOs receive funding from multiple sources, including for special projects requested by its participants.