Indiana HIE’s John Kansky on the Trajectory of Health Data Utilities, TEFCA

John Kansky has been president and CEO of the Indiana Health Information Exchange (IHIE) for more than 10 years. He also has been instrumental in the development of the concept of a health data utility (HDU), which is defined as a “public-private resource that provides a source of truth for robust clinical and non-clinical data, which can be leveraged by state and other healthcare system stakeholders.” He recently spoke with Healthcare Innovation about how HDUs are evolving and their complementary roles with federal TEFCA policy development. 

Healthcare Innovation: What if we start this discussion with some updates on activities at the Indiana HIE. Do you have an official designation as the state health data utility?

Kansky: We do not. I would say we clearly function as the state health data utility, and like every other functioning health data utility, we aren’t perfect. We’ve got many gaps to fill, but that’s our role for the state of Indiana. 

HCI: Has IHIE continued to grow in terms of who's contributing data, or has it reached almost full saturation of hospitals and provider organizations?

Kansky: The growth has been in the diversity of participants, primarily, and the diversity of data that's being contributed. We got a lot of growth in the participation of local health departments. We're also starting on a project that will have social determinants data being added to our statewide inter-organizational health data repository.

HCI: Was that growth in the participation of the local health departments something that grew out of necessity during the pandemic?

Kansky: I think it was inspired by lessons learned from the pandemic. We've had certain large health departments that have participated for years, but with the support of our State Department of Health, they've restructured the way that they're approaching public health across the state of Indiana, and that has helped. They want the local health departments now to be connected to IHIE and so have supported a project to take that on. 

We have worked with the State Department of Health on many use cases over the years, such as newborn screening results. Every newborn is screened for certain conditions, and the health information exchange ensures that those results are made available to providers across the state. That is compelling because if the child has a rare condition or it requires clinical intervention, it's very important for that kid’s development that those results be communicated effectively.

HCI: What about working with the state Medicaid agency? 

Kansky: The Medicaid program very graciously shares Medicaid claims with the state repository, and that supports the quality, safety and efficiency of the care of those members across Indiana.

All the managed care organizations that have contracts with the state are participants in our exchange. We're able to notify them when their members participate or have an encounter in the healthcare system, so that they can be aware of that and intervene. We provide them clinical data around that encounter and that patient to help them do their jobs.

That said, I definitely think that we're working hard at doing more with our state Medicaid program, because I think there are plenty of opportunities there. 

HCI: In some regions, when we interview hospital-based clinicians, they say all the hospitals in their area are on Epic, so when they want to look up data about a patient, they go into Epic Care Everywhere. If you ask them about the regional or state HIE, sometimes they shrug their shoulders and say, ‘We don't use that much.’ Is that a problem? Is that limiting the value of the regional HIE and the enthusiasm of the health systems to participate and work with them?

Kansky: We have plenty of Epic customers that are participating in our exchange, and perhaps not surprisingly some of them are our largest customers. I think the real obstacle is the perception of overlap. The question that I hate the most is the phone call from the hospital CIO, who asks: ‘Do I use you or do I use TEFCA?’

I feel like we’re starting from the beginning, because that's like asking: Do I eat this orange or buy a pickup truck? If there's a message that I'd like to try my best to communicate, it's that you should definitely eat the orange and you should probably buy the pickup truck. Every state needs a robust, capable, well-managed health data utility just like every state or every market needs a well-run water utility, right? We need water for so many things. People need to drink water and water their lawn, but there are also farmers and there's a brewery and there's a steel mill. We just need water. Whereas TEFCA — and really the economy of data exchange that you described with Epic customers — has been designed around the Epic platform and Care Everywhere. Those things are more similar to each other. That helps to explain why you see Epic really embracing TEFCA, because, for the things that Epic has been working hard to make work well for their customers, that’s what TEFCA is largely aimed at as well. Meanwhile, there is a water utility making sure that the brewery and the farmers and the steel mill and the people at home all have water.

I love analogies, but sometimes I try too hard. But if the healthy utility is the water company, TEFCA is like federal regulation spelling out how you deliver water to residences. Then the QHINs will actually move water to the houses. But TEFCA is silent on the breweries and the fire stations and the steel mills and watering the lawns. 

HCI: The state of California has created its own Data Exchange Framework, and is starting to develop policies around that. Do you see a value in that happening at the state level around the country? Are there things that they can do in sync with TEFCA, but providing value at the state level?

Kansky: I think that if states start to freelance and aren’t very careful in the policy that they craft, and if they're not doing it to define a well-informed complementary relationship between their health data utility and TEFCA, then that could be a really, really bad thing. On the other hand, if we had a model policy that artfully helped to define the best use of TEFCA and the best use of the state health data utility and how those things complement each other, that would be fantastic, because I do think there are a number of state policies that are all over the place. There are some states that have a lack of policy to support the health data utility, and some states are further along. You’ve got to be really careful to get it right.

I'm biased by my experience in that the healthy data utility in Indiana emerged literally before there was the term health information exchange, and it has evolved in a business ecosystem, not a policy ecosystem. That's my way of saying there wasn't a lot of policy guiding our growth and progress over the last 20 to 30 years. IHIE has been around for 20 years, but based on some pioneering work that the Regenstrief Institute started 10 years before that. I have a very complicated relationship with policy, because I've seen healthy utilities grow and function in the absence of policy. And there's something elegant about health information exchange done in a free market economy, if you will. No organization participates unless they believe in the value, and no organization pays a fee unless they think they're getting value for what they do. 

I used to stand at podiums and smugly suggest that more states should be like Indiana. But the world has moved on.One of the important reasons that health data utility as a concept has emerged is because there is a difference between health information exchange and health data utility — health information exchange being a core function of a health data utility. But if you want to be a health data utility, you’ve got a lot more work to do for a lot more segments and a lot more purposes.

HCI: Could talk about this the work of the Consortium for State and Regional Interoperability and Civitas Networks for Health. Are their roles complementary?

Kansky: I’m on the boards of both CSRI and Civitas Networks for Health. Civitas is our national association, and we want them to help us with all the things one expects from a national association. We don't expect our national association to do innovative things that require capabilities of health data utilities. CSRI was formed because there were a number of large, capable organizations that, at that time, weren’t yet calling themselves health data utilities. If you’re a health information exchange, and you start doing more things for more segments, and you just keep growing, one day you wake up and you say, ‘Hey, I am not just an HIE anymore, am I?’ There was a recognition that those organizations, working together, with their capabilities and their scale and their people, could do things they couldn't do by themselves. 

The origin story was around the Office of the National Coordinator suggesting that it would be great if HIEs could do multi-state COVID dashboards during the pandemic response. In three weeks, we put together a six-state dashboard that turned into a 22-state dashboard over time. And that was sort of the inspiration for what has become CSRI. Its vision for the United States is that every state has a capable health data utility.

HCI: A while ago, we saw a surge of consolidations of HIEs that seemed to be accelerating for a while, but we haven’t heard of any recently.

Kansky: There are two trends, and I think they both will continue, although you're right about the recent pace. One is consolidation to unify a state and the other is consolidation to start creating multi-state organizations. We've got Contexture, CRISP, and CyncHealth that are all multi-state. I know there's activity in various states that are saying, ‘Hey, we need to really build our health information exchange or we’d like to partner with another one.’ There are absolutely conversations happening, and I think that can and should continue. I think every state should have its own health data utility. That does not mean that those health data utilities cannot have multi-state organizations supporting and enabling them, making the economics and lessons learned and consistency in interstate data flow all better and easier.

HCI: For instance, Illinois is a state that has struggled with developing HIE infrastructure for a long time, but maybe they could piggyback on what either Iowa or Indiana or Michigan has done. 

Kansky: If you wanted to talk about our efforts to try to support Illinois health information change, it wouldn't be an article; it would be a book.