Health Data Utility: From Vision to Reality in Many States
In August 2020, David Horrocks, who was then president and CEO of the Maryland-based Chesapeake Regional Information System for our Patients (CRISP), and John Kansky, president and CEO of the Indiana Health Information Exchange (IHIE), proposed the idea that every state should have a state-designated and regulated health data utility with a monopoly akin to an electric company. They noted that during the pandemic, states that already have such state-level organizations in place were able to leverage them for crucial public health needs.
Three years later, the health data utility (HDU) concept that Horrocks and Kansky envisioned is becoming a reality in many states.
Last year, the State of Maryland signed into law requirements that designate CRISP as the state’s health data utility. Effective Oct. 1, 2022, state law required CRISP to provide data in real-time to individuals and organizations involved in the treatment and care coordination of patients and to public health agencies. The legislation also required the Maryland Department of Health, nursing homes, electronic health networks, and prescription drug dispensers to provide data to the state-designated HIE. Similar efforts are underway in Missouri and Michigan, while California is working on its own version of a requisite data-sharing framework.
In March 2023, Civitas Networks for Health, a membership organization for HIEs, published a Health Data Utility Framework that intends to guide states, regions, HIEs, and community partners through the evolution from HIE to a health data utility.
Civitas CEO Lisa Bari, M.B.A., M.P.H., says that the health data utility model emphasizes local, regional and statewide connections. “It talks about how we can use health data in those regions and states as critical infrastructure for meeting various needs, from clinical care to social care, public health, and more. It’s really acknowledging the progress that has been made by those state and regional entities and also framing them as critical infrastructure resources for those states and regions,” she explains. “I think you'll see the vast majority of the really effective organizations move toward the health data utility model because they see the need and because they are increasingly receiving funding and engagement from different entities such as Medicaid and public health, beyond just basic clinical data exchange.”
By the HDU Framework’s definition, “HDUs are models with cooperative leadership, designated authority, and advanced technical capabilities to combine, enhance, and exchange electronic health data across care and service settings for treatment, care coordination, quality improvement, and community and public health purposes.”
The term health data utility helps signify that HIEs are going beyond just data exchange, says Jolie Ritzo, M.P.H., senior director, network engagement at Civitas. “They have value-added services and analytics. They're working in a way where it's not sufficient to just move the data; they also have to understand the community need and create governance structures that support them. There were initial use cases for health information exchange that were specific to moving clinical data, but we need much more robust social determinants of health data and public health data. This is not HIE 2.0, but rather, a much more evolved model, and it's continuing to evolve quickly.”
An example from Maryland
CRISP Shared Services (CSS), the nonprofit arm of Maryland’s health information exchange that provides services to other HIEs across the nation, recently named Marc Rabner, M.D., M.P.H., as its first-ever chief medical officer. Rabner agrees that while the traditional model of the HIE is clinical stakeholders sending data to each other, the HDU expands that concept beyond the walls of the typical healthcare delivery sites and payers to include public health and other nonclinical stakeholders.
“For instance, we have a use case around asthma,” he says. “There's a priority in Maryland for decreased emergency department utilization among children with asthma, and better controlling their asthma so they're not showing up in the emergency department.”
Rabner says that in Maryland, they can identify children who present to the emergency department with asthma, and the HIE automatically sends that information to a Medicaid-supported program that's run by the local health departments. The local health departments can reach out to those families and ask them if they're interested in environmental controls that they offer. They can go into the house and provide HEPA filters, get rid of vermin, and offer environmental controls to help prevent that patient from going to the hospital.
“What's really great about the HIE is we're able to do that in near real-time, so that we can ask about their interest in those services when it's relevant,” Rabner says. “What we see is that a lot in patients for the week or two after their ED visit or hospitalization are very interested in not letting it happen again. But then as time goes on, their interest in enrolling for these kinds of services wanes, so being able to provide services when it's most relevant to the family and patient is very valuable.”
First steps in Oregon
Richard Gibson, M.D., Ph.D., M.B.A., medical director of Comagine Health, a national nonprofit consulting firm, is part of a group coming together to envision a community health data utility in Oregon. He describes four major data sources they are talking about bringing together: the Reliance eHealth Collaborative HIE data, a community information exchange involving a number of community-based organizations, public health, and an all-payer claims database.
“With those four data sources, how can we meet the needs of providers, community-based organizations, and public health? Those last two that have been left out of the conversation largely so far,” Gibson says. “Healthcare providers and payers have been involved in HIE for a long time. We have to say to community-based organizations: What problems do you have that could be solved by a high-trust network where the participants are involved in designing the product, and there's governance that involves all of them?”
A health data utility potentially could also help with reducing the quality measure reporting burden for clinicians, he adds. Today, the providers work with six to eight payers, and each has its own quality measures. Each one wants their own reports, and each one has their own monthly meeting. “Here is an opportunity for a community health utility to do that function — one set of clinicals quality measures to react to,” Gibson says.
Sarah Hallvik, Comagine’s vice president of data solutions, adds that the data governance issues are separate from the technical challenge of bringing all these different data sources together.
“We want to make sure that we have the data governance in place that meets the needs of all of the parties who would be asked to contribute data and/or pull data out of a health data utility,” Hallvik adds. “It helps to have those use cases defined in advance and have the community benefit organizations at the table with everybody else. We're hoping that sets the community health data utility up for success. Everybody who contributes data should be able to pull out enriched, more meaningful data, that ultimately helps them provide better service to the same shared patients and clients that we're all working with across the state. The data governance — who makes the decision on how the data are used and if it's legal and ethical, and who pays — is an equal counterpoint to the technical question of how the health data utility functions and what technology platform is used to facilitate that.”
Erick Maddox, executive director of Medford, Oregon-based Reliance eHealth Collaborative, says that in some communities across the country the HIE is set to function as both community information exchange (CIE) and HIE in the health data utility equation. “At Reliance in Oregon, we don't see ourselves playing that role. We will help with the interoperability and the data-sharing work. We have our governance structure for healthcare,” he says. “But at the center of all this needs to be a governance structure that sets the rules of the road between four key groups: HIE, CIE, all-payer claims database, and public health. How do we set up this governance function, so that the healthcare side — through the HIE — knows how to share and move data appropriately with social services through the CIE or with payers and public health, and how does all that data move across? That's really where our focus is.”
The utility concept resonates in Nebraska
Jaime Bland, D.N.P., R.N., is president and CEO of CyncHealth, which provides interoperability services in Nebraska and Iowa. Her organization has started using the health data utility phrase to explain its services. She says that because Nebraska is one of the only states using a public/private partnership for electrical services, “we really started to make parallels when talking to legislators about the concept of a public/private partnership utility. Just like we need the same type of power resources across urban and rural, we need the same data to be available across sectors and across urban and rural environments. The alignment made a lot of sense, especially from a policy perspective.”
CyncHealth tries to understand what the health utility service needs are at the point of consumption, Bland says. From a provider's perspective, the data needs change, whether it’s for a payer, a primary care provider, ED physician or a nurse practitioner out in rural Nebraska. For instance, event notifications are needed by all of those different stakeholders, but the form and delivery mechanism may be different.
“With event notifications, we will deliver anything from workflow integration via APIs to a flat file or Excel document so they can manage their population,” Bland says. “I think it's the scale and right-sizing of the interoperability that has contributed to our growth, and this concept of utility has really been something tangible for people to understand better than the HIE because it's really not an exchange of information, right? You share your data, and we take all the other shares and package it back to you in a way that is consumable for you. So that's where the utility concept really took off for us.”
An HDU takes shape in Missouri
While Maryland was the first state to enact enabling legislation with the term health data utility in it, Missouri was the first to enact enabling appropriation for a health data utility to the tune of $50 million a year annually, says Angie Bass, executive vice president and chief strategy officer for Velatura, a nonprofit arm of the Michigan Health Information Network Shared Services (MiHIN) that offers HIE services in several other states, including Missouri.
There are four HIEs that serve providers and payers in the State of Missouri, and they are all data-sharing partners, Bass adds. “We all worked to advocate for the health data utility model. We at Velatura brought the model to the group, and then we worked to solidify commitment with them to bring it to the state to say ‘Hey, this sounds like a great avenue to bring interoperability together in Missouri and work with the state as a partner to really drive that digital healthcare ecosystem.’”
The group is using the state funding to do some coordinating activities and stakeholder engagement interviews to get consensus on how they want to structure the health data utility, in terms of governance, operational and technically. “A final report that will be out by the end of the year, and then we'll go into implementation phase on each of those pieces.”
Bass says the term health data utility does a much better job of describing what Velatura does than HIE. “First, it speaks to the evolution of HIE as becoming a new vessel for expanded interoperability, a wider net to cast for the digital healthcare ecosystem to be participatory by utilizing a shared utility. Health data utility also implies a digital health ecosystem implemented and utilized as a public utility. The term public utility implies lots of things. Everyone gets to use it. Everyone gets value out of it, and they pay for those value-added services. There's a layer of regulation that is absolutely needed and also a new layer of sustainability.”
COVID changed everything
TIm Pletcher, MiHIN’s executive director, says that the conversations he has with legislators in Michigan have changed dramatically over the last few years and there is a greater openness to the importance of a health data utility model. “I think COVID made certain things easier,” he says. “COVID was basically a 9/11 equivalent for social services and equity and a lot of what we do in public health. There was a lack of infrastructure and a lack of coordination. The folks who were not used to working with their HIE duplicated resources and wasted a lot of time. I think that the health data utility is very much going to be a model for economies of scale.”
He says that looking across siloed legacy systems, most state and county social services programs can’t tell you if they are dealing with the same person. “We HIEs have been struggling with patient matching for years and we've gotten pretty good at it. Some of us have even progressed to doing consent and other hard problems. It's going to take you a decade to do that if you don't build on this infrastructure. We want to build on these core utility type services to do more and more.”
Once you start to look at things like SNAP, children's services, and doing a better job preventing people from getting sick, that's much broader than just the social determinants of health, Pletcher says. “It's full cross-sector infrastructure. Suddenly, we realize we need a utility.”
Pletcher says transparency is a key issue as health data utilities reach out to stakeholders beyond traditional health system partners. “As we expand to these other cross-sector areas, it can't be dominated by the health plans or the big hospitals. The governance, particularly the operational governance of things, has to evolve. I think that's going to come with more public-sector funding. The trick will be to do that in a way where the politics don't screw up the ability to execute.”
A chance for some states to start over
There are some states where the development of a state-level health information exchange has failed, despite repeated attempts, perhaps because incentives were misaligned. Could the Civitas framework help those states develop a path to success? Bari thinks so. “We are trying to show which types of stakeholders need to be involved to make this successful in different contexts,” she says. “We think that the framework could help regions and states that have been underserved figure out how to expand their efforts or create new efforts.”
Illinois is an example of a state that has tried and failed. But there are lots of interested parties in Illinois, Bari notes. “They are certainly served piecemeal by different technology companies, but they don't have a full nonprofit neutral convener. The folks who we work with in Illinois ask how they can make this happen. And honestly, something like the HDU Framework can help them make a case over time, and help them figure out who needs to be at the table to create this type of thing for their region or their state.”
