Q&A: Laura Young, executive director of the Behavioral Health Information Network of Arizona

As regional and statewide health information exchanges (HIE) have formed around the country to share clinical data, many have balked at grappling with the legal and privacy issues around behavioral health or have put behavioral health on the back burner. In Arizona, a group of behavioral health providers have come together to create their own private HIE to share data among themselves and eventually with other providers using the state HIE. Behavioral Healthcare contributor David Raths recently interviewed Laura Young, executive director of the Behavioral Health Information Network of Arizona (BHINAZ), about its goals and progress so far.

BH: What was the impetus for the creation of BHINAZ?

Young: BHINAZ is the brainchild of several community-based behavioral healthcare organizations here in Arizona and it was born out of a couple different driving factors. The biggest one was that the regional behavioral health authority contract in Maricopa County, which is one of the biggest in the country, was coming up for bid. Historically, when those authorities change over to a new organization, the relevant clinical data becomes inaccessible. So there was a need to have a continuity with the client data within the behavioral health community.

We also want to make sure we can have the relevant treatment data available both to behavioral health organizations and physical health organizations to better support the clients they are serving.

Another factor is that in Arizona, our state HIE does not exchange behavioral health data. Because of the complicated privacy laws, this became a priority that they had not yet tackled.

BH: What were the first steps to getting off the ground? Have the biggest challenges in getting it up and running involved technology or policy issues -- or both?

Young: Technology is a moving target. We would roll up our sleeves and begin and then realize we needed other things. So we have course-corrected in putting our HIE together, but most of the challenges we have come across are pretty typical. From a behavioral health perspective, though, we spent a lot of time on legal and policy review, making sure we had covered everything from a consent management perspective. We want to make sure we are receiving the proper consent and have a good mechanism for doing so. We spent a lot of time hammering out our consent document, and then incorporating that in a technical format into our HIE.

BH: I understand that one of your goals is to connect to the broader statewide HIE. Yet Arizona’s HIE is opt-out for consent while your behavioral health HIE is opt-in. Is there a way to reconcile those two approaches?

Young: There is some work that needs to be done there, so we are approaching it in two phases. The first phase is for our HIE to receive data from the state HIE to get the physical health data into our HIE. For that phase, we let the state manage the opt-in. We don’t receive any data that has been opted out. We really are passing the data through our system to connected providers.

Going the other direction, what we envision is that the physical health providers would collect consent at the point of care to receive access to the behavioral health record as a one-off for each provider. How we would do that from a technical perspective has not been fleshed out yet.

BH: Within your HIE, is the information a patient can choose to share all or nothing, or is there a way for them to share some types of data and not others?

Young: It really is all or nothing. We are treating all of the data within our HIE as protected 42 CFR Part 2 data. If the client isn’t comfortable sharing their Part 2 data, then we aren’t going to share anything else.

I will say though that it is granular by organization. For instance, if a client came for a visit to one provider and opted in to our HIE, their data from that visit would be shared out with the rest of the network where there is a treatment relationship. Let’s say a week later that person went to a detox facility. The detox facility would receive their data from that first organization they visited. But if the client decided they were uncomfortable sharing their detox data with anyone, that data would not flow out to anyone in the network. By doing it that way, we have the ability for data to be flowing to some or all of the network rather than an on/off switch, so the clients have some more flexibility.

BH: Do you plan to create a patient portal? Could patients look at their own records or could they use that to change consent options?

Young: It is in our roadmap, but we don’t have that currently deployed. They would be able to see aspects of their personal health record and do things like revoke or execute their consent.

BH: How many organizations are sharing data now and what are your goals for the rest of the year?

Young: We just completed our pilot phase with two organizations, Jewish Family Children’s Services and Quality Care Network. Now that we have completed that and have our consent management system up and running, we are working to complete connections. We have five organizations in the queue right now. A lot of them are related to the new behavioral health authority contract that just went into effect April 1. Those are our priority right now. Those five will be completed by July and then we have another 10 that we hope will be completed by the end of this calendar year.

We anticipate having the one-way connection to the state HIE completed this year as well. Also, we are doing a connection with Sonora Quest Laboratories. One of the functions of the HIE is that our connected providers can order labs directly through the HIE from their EHRs. This is a big value to the laboratory company because with this contract changeover there are a number of organizations that all need to change from one lab company to another, and for them to complete multiple interfaces in a short period of time was really going to tax their resources. Instead they can connect to us just once, and we were connecting to these organizations anyway, so that is one way that we can synergize our efforts.

BH: Do you have a business model in which the providers pay subscription fees?

Young: We structured our HIE to not be dependent on grants. This is a community-owned HIE. There are five behavioral health organizations that own our organization and have put funding into the startup. To remain sustainable, we have a subscription model for organizations that connect.

BH: Are there behavioral health HIEs in other states? Have you learned from them?

Young: We work with an organization in Nebraska, called eBHIN (Electronic Behavioral Health Information Network). They are the only other behavioral HIE that I know of. They are using a very similar platform to the one we are using, so we worked very closely with eBHIN’s Wende Baker, both from an operations policy perspective and best practices. And now we are reciprocating because we have done so much work on consent management. So we are sharing that information with them.

But outside of our two organizations, I am not aware of any other stand-alone behavioral health HIEs. There are HIEs that are taking on aspects of behavioral health, such as using Direct for point-to-point sharing of information. We are always looking to learn from others.

BH: I saw that you recently spoke before a Health IT Policy Committee Privacy and Security work group. Do you think that progress is being made in terms of policies that will help connect behavioral and physical providers? Are there things that you would like to see ONC or other federal agencies do to help?

Young: Everybody is realizing the challenges. The federal legislation around sensitive health information wasn’t written to address the electronic transmission of data. It is a bit outdated. There are people who would like to see protected data treated more like we treat data under HIPAA guidelines. Obviously that would make things a lot easier for organizations trying to provide integrated care.

When I talk to other organizations, they tell me that the complicated privacy laws are one of the main factors preventing them from having behavioral health data in their HIEs at all. They tend to just stay away from it. So if that were loosened up a bit, more HIEs would be able to add that kind of data to their exchanges.

BH: It seems like another challenge is that behavioral providers weren’t included in the meaningful use incentive program and so many are still on paper or just getting started with electronic records. Do you see that among the providers you are talking to?

Young: For the early adopters, we are looking for organizations that have had an EHR for a period of time. But we definitely have talked to a number of organizations that are still on paper or on a very outdated or homegrown EHR system that doesn’t really lend itself to any kind of data exchange. They don’t know how they are going to pay for an EHR, and because there are no incentive dollars, they are really struggling. They want to be in the game, too, but I think that was really an area that got missed in terms of the legislation that could have benefited everybody.

We hear from a lot of physical health providers that really need and want the behavioral health data to make better decisions, so it helps everyone to have that information. Incomplete data is just as bad as having no data.

BH: Any recommendations for behavioral health providers that might be considering starting an HIE in their regions?

Young: I think the biggest thing that would lend to success is making sure that the consent management piece is ironed out first. You want to start on that consent process early on because without having participants consented in to the HIE, it really doesn’t have any value. I also think it is critical to focus on how providers will be using the data. We work with providers on training, to make sure that the HIE gets embedded in their workflows so they are able to use the data in a meaningful way with their clients. Many providers are very limited in the time they have with patients, so we don’t want to make it cumbersome to get to the data.