Health Information Exchange: Start with the right structure to find success

As health information exchanges across the nation gain momentum, challenges remain. The first is choosing a model that fits within state guidelines and the culture of the community. The trial-and-error approach to HIEs led to some early failures. But jumping over that first hurdle and choosing the right structure also is the first step to long-term success.

In this exclusive interview, FierceHealthIT talked to Joy Duling (left), executive director of Central Illinois Health Information Exchange and Laura McCrary (right), executive director of the Kansas Health Information Network and about their organizations' strategies, goals and challenges--including how to get both patients and providers to participate in data exchange.

FierceHealthIT: Tell me a little bit about the structure and philosophy of each of your organizations.

Joy Duling:We're a federated, nonprofit health exchange. We got our start under a regional healthcare improvement collaborative and spun off into an independent nonprofit about a year and a half ago. We cover 209 counties, 15 hospital members and nine non-hospital members. Eleven of those hospitals are currently contributing data.

Our model is completely subscription based--no federal or state money supporting us. We're not transactional. We have a sliding scale based on the size of the organization. It's bed count for hospital and for independent providers it's per-provider.

We've been very inclusive from the beginning. A lot of HIEs start out with the largest organizations in their area. We've really emphasized the smaller organizations in the community. So alongside the hospitals we've had federally-qualified health centers, health departments, behavioral health providers and very small independent practices--and that's been important to us.

Laura McCrary: One of the things that Kansas did was establish ourselves as an opt-out state. That's an important early consideration, whether you're going to be an opt-in or opt-out.

Patients are notified that their providers participate in the healthcare information exchange. They're notified through signs that are required to be posted in the practices. They're also notified through brochures in the admit waiting areas. And all of our providers are required to change their notice of privacy practices 30 days prior to them going live and sharing data into the exchange.

FHIT: What are the benefits of an opt-out HIE?

McCrary: The opt-out process has been in place for almost a year, and we have fewer than 300 people who have opted out. The policies and regulations were established by the state. It outlined and defined the rules for exchange in Kansas. In addition to that, there is a process to opt-back in. And we have seen some patients that opted out early on have opted back in.

FHIT: What made those patients change their minds?

McCrary: In part it's marketing. We've had a lot of positive publicity about things saving people's lives in Kansas using the health information exchange. People sometimes re-think because it could save their lives.

Duling: We've done quite a bit of consumer work in Illinois. Our senior citizens are some of our strongest advocates, because they're the ones who have to carry around binders full of medical information. So maybe they don't understand how the widgets and gidgets all fit together, but they get the concept--and they want their patient experience to be better.

FHIT: How do you talk to patients? Do you encourage them to get into the technical details of encryption and data breaches or is that too techy?

McCrary: We tell people it has the same level of security of your banking site. The same protocols are in place.

FHIT: How are you encouraging provider participation and buy-in?

Duling: On an individual level, physicians come into it with varying degrees of comfort. But then they have a-ha moments, when all of a sudden it becomes useful to them and we've won them over. In the Decatur community, we had one physician who looked up a patient's record and found out they had just left the emergency room across town 15 minutes earlier--the information is that real-time in the HIE. And that changed how he interacted with that patient. He was sold.

FHIT: What other challenges are top-of-mind right now?

Duling: Our biggest challenge is in the area of sensitive health information--behavioral healthcare information, for example. Illinois regulations are fairly restrictive and the state is working some legislation through to try to make it more explicit that behavioral health information can, in fact, be shared by an HIE. But in the meantime, the providers are being extra cautious about it.