On Aug. 17, at the Strategic Health Information Exchange Collaborative (SHIEC) annual conference, an all-star panel of health information exchange leaders discussed the momentum for the concept of HIEs as state-level utilities.
Two of the panelists, David Horrocks, 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, have made the case before that every state should have a state-designated and regulated health data utility with a monopoly akin to an electric company.
Jessica Kahn, co-leader of McKinsey & Co.’s state Medicaid and social services information technology work and a former CMS executive, said that she has tried to make the case for many years that the federal and state investment in HIEs should benefit state and federal programs, such as Medicare, human services, Medicaid and public health. “That was a large part of the strategy in making those investments in the first place, not just for the individual’s health, but also for the population level of those programs.”
She said examples of the use of HIE data during the pandemic, including vaccine credentialling and monitoring breakthrough cases, has made the case for statewide HIE utilities. “This is the time. There's a level of urgency to this conversation, to catalog these use cases and to go and have those conversations with your state colleagues, and have your federal colleagues in support of that. Because you now actually have a data-driven conversation about what a health data utility can do for health in ways that it would be redundant, and more expensive to replicate in many other fashions. I'm excited about this, but also very afraid that people are going to miss the moonshot and are going to think that of the million other things they're trying to get done in 2021, that this is just one of many competing priorities. And I really want you to put it at the top of your list.”
David Horrocks of CRISP described the value of a health data utility as being able to combine data to enhance data. “Think about a COVID case file and the vehicles that we've had for many years for public health to receive information. If you combine a COVID case file with chronic condition flags from Medicaid, Medicare and commercial claims, you enhance that file in a way that would be very difficult for public health to do by putting new reporting mandates in the field,” he said. “I think this role of combining data to enhance data is unique. And because we are trusted, and because we are regulated to have extra patient privacy protections, I think it's uniquely a role that we are able to play.”
Jaime Bland, president and CEO of CyncHealth, which runs the HIEs in Nebraska and Iowa, said her organization is trying to facilitate the last mile in those states. “When the provider opens up their EHR, the data is there, much like when you flip your light switch, the lights go on,” she said. “That narrative has been an acceptable way to explain why this is important, even before COVID. We've had a lot of success in our region, with the utility model, and explaining that your use case might be secure messaging, the next one might be for value-based care, and the next one might just be for query. And we meet all of those needs. That’s really what a utility does.”
Melissa Kotrys, CEO of Contexture, a regional organization recently formed to operate the HIEs in Arizona and Colorado, said the health data utility model is just an extension of what they’ve always done as a data trustee. “As health information exchanges, the traditional model is you're bringing together clinical data across disparate systems. You're not going to do that without the trust of your community. Once you prove that you can do that well, from an infrastructure standpoint, from a data assurance standpoint, and from a policy and trust standpoint, then the community just wants more, because they understand that they need social determinants of health, they understand that if you can combine clinical, and claims data, that you can do more profound analytics,” she said. “They understand that if you can bring PDMP data in, you can add that to all this other data. What we found in Arizona is that we have gotten over the tipping point, and we've excelled in the sharing of the clinical data. Now the community just comes to us and says, ‘Can we do advanced directives? Can we do SDOH?’ And the answer is yes. If you have that framework of community trust, community collaboration, and an aggregation of data, there's a place for a lot of the different interoperability solutions that we all participate in, day in and day out.”
Claudia Williams, CEO of Manifest Medex, the largest HIE in California, said you should always watch policy, because it creates business, not just because it regulates you. “If there was ever a driver of the whole health system in California, it is Medicaid, which covers one in three Californians. And they're going through a massive shift in approach towards one that puts health plans in charge of not just health care, but also social care,” she explained. “So when you look at the challenge of delivering on social and health care, in an ever-expanding population, the challenge becomes managing data. At Manifest Medex, we are aiming to be the population health backbone for bringing together healthcare data, social data, community data, to drive a new model of Medicaid that's never existed.”
One challenge is that when you talk to the Medicaid leaders, data is the last thing on their mind, she said. “It's been challenging to try to move that to the front and point out that this whole model is going to fail without the data,” she said. “One thing that happened as a result of these conversations is the governor and the legislature passed a profound data-sharing mandate in the last month that will require full record health sharing on a proactive basis, from both plans and providers. Lots of definitions still need to come together, but I think these two policy events are driving us towards the model that we've been talking about here. And it's going to be a fast ride; fasten your seat belts. The bill was passed a month ago and the advisory group will form in September to shape it.”
There is a sense of urgency around HIEs and public health now, said CRISP’s Horrocks. The country is about to undertake a big public health data modernization effort costing billions of dollars. He said the model of data flowing from the states up to the federal agencies has lots of advantages. “We need to promote that right now. If we don't, we're going to see a top-down approach,” he said. “They're going to give those billions to the FDA and CDC, and they'll put burdensome requirements on the delivery system. I think that now is the moment to make this happen. We need to have a path to cover all 50 states and territories because the public health folks are not going to accept that we're great in Nebraska and Arizona and California, but we have got a lot of gaps out there. They need us to solve this across the whole country.”
In California, health equity and Medicaid are probably as big, if not bigger, drivers of change than the pandemic, Manifest Medex’s Williams said. “Our state does everything by county. So not only do you have the fragmentation across providers and plans, you have 58 counties, each doing things a little bit differently. And now Medicaid is asking how are we going to know if this huge experiment we're about to launch is successful, working with 58 different counties. As states are launching bigger and bigger policy plays, they're going to have to be accountable for whether those things are working in six months, 12 months or three years,” she added. “Are they going to know if providing housing services reduces hospitalization? How are they going to know if providing wraparound services actually increases outcomes for kids? I think the next layer of infrastructure we're going to have is how to evaluate the effectiveness and the impact of some of these big policy plays. And where else are they going to turn to look at that? So that's not quite this month's challenge, but we have the infrastructure to answer all those questions.”
Earlier in the week, SHIEC announced it would be merging with the Network for Regional Healthcare Improvement (NRHI) to form a new organization named Civitas Networks for Health.