Utah started building its All-Payer Claims Database (APCD) three years ago to bring public transparency to the cost of healthcare. Last September the APCD started collecting claims data from four commercial payers, and is now analyzing episodes of care ranging from maternity to chronic disease management. Utah's APCD has more than 2.2 million unique Utahns identified, linked, and grouped, and more than $10.5 billion Utah healthcare claims charges represented. Keely Cofrin Allen, Ph.D, the director of the Office of Healthcare Statistics at the Utah Department of Health spoke with HCI Associate Editor Jennifer Prestigiacomo about the competing priorities she has to balance and what laid the foundation for her organization’s success.

Healthcare Informatics: Payer databases have generally been met with skepticism and resistance when they first hatch. How did you build consensus to support this project?

Keely Cofrin Allen, Ph.D.: Of course there was [resistance]. And we were very aware to lead with the security and the privacy issues related to the data. However, we did not struggle with it in Utah as much as some other states did. Minnesota had to make some significant changes to the way they ran their APCD because of those privacy concerns. Here in Utah—it’s surprising because it’s a very red state—we had enormous backing from the legislature because they asked us to do episodes of care analysis across an entire course of care, be it maternity, which would include prenatal through the birth and after care of the mom, or a knee replacement, which is more than just the surgery. And because we were asked initially to do episodes of care, we were able to go back to the legislature and say, ‘if you want a complete episode on people, you don’t want to lose people every time they change plans; we’re going to need identified data in order to link people.’ And we were given leave to do that. We have the highest encryption protocol there is available. We keep the data secure and encrypted on a separate server with no ties to the outside world. I think one of the things that was an advantage to us in Utah is that we have 20 years of history in my office [the Utah Health Data Committee within the Office of Health Care Statistics in the Utah Department of Health] collecting health information, and because of the two decades of trust we’ve built up, the APCD project fit nicely into that.

HCI: What’s Utah APCD’s relationship with the Utah Health Information Network (UHIN), the state HIE?

Allen: We actually get our claims through UHIN. UHIN has been a very important partner for us from the beginning. From a policy point of view, they’ve convened meetings on our behalf to get the payers together. Two years ago this fall, they were very helpful in setting up standards and helping us set up the 837 standard [the ANSI ASC X12 837 claim/encounter format], and the modified 837 that we use. We have plans to submit claims via UHIN, and we have a contract in place right now where we’re funding a UHIN employee to help us engage plans we haven’t engaged.

HCI: What are some of the Utah's goals with its payer database?

Allen: I think the public health benefits of a data set like this were very apparent to the Utah DOH [Department of Health] from the beginning. I said before we even had funding that to undertake a project of this magnitude that I wanted it to be of a public health benefit. Given the spending of $615,000 of the public’s money, the public health benefit needs to be there. We work very closely with the Department of Health in our building. We think once we get public health data, this will be very useful from a public health perspective to look at disease prevalence by area and by time. Obviously, our data aren’t real-time enough for surveillance of the really critical things like swine flu.

HCI: Besides maternity, what other episodes of care will you be analyzing?

Allen: The next series of things we’re going to look at are chronic diseases, the heavy hitters. When we look at the top 10 diseases driving costs in Utah, [we find] diabetes, hypertension, hyperlipidemia [at the top]. The list is no surprise to anyone. What we’re going to try to do is drill into those chronic conditions starting with diabetes, since that’s the No. 1 cost driver, and really start looking at where diabetes is occurring. What is the difference between a healthy diabetic and one who has other different chronic conditions, or who has complications that is a result of their diabetes? [We want to show that] diabetes if it’s well cared for, can be relatively straightforward and not that expensive to maintain. It’s when people move into a second chronic condition and develop secondary chronic conditions is when things start getting expensive. When we talk about the burden of chronic disease, we really need to talk about both the cost burden, but also the burden to the person with the disease. For instance, if they have asthma exacerbation, and they spend the night in the ER, or they have to be hospitalized. Not only is that costly, that person’s not available to go to work or whatever that person has to do.

HCI: Who gets the most out of this project? What’s in it for providers?

Allen: I think the policymakers are honestly getting the most out of it right now. I mean policymakers on the hill now looking at reforming healthcare, and policymakers in this specific UDOH building who are looking to improve the health of people in Utah. We haven’t really reached providers yet. We’re engaged with them. I think they’re still learning about what an APCD can do in terms measurement. And that of course is measuring providers, what the policymakers, the public, and the payers want.

I think what the providers want is information that will help them take care of their patient. I am speaking very generally from what I’ve heard speaking to providers, including a representative on the health data committee that oversees the work that my office does. And to the degree that the APCD can help do that, they’re all for it. They’re not terribly interested in being measured, they’re not terribly interested in being incentivized; and I can’t say I blame them. I think the payers and purchasers are more interested in measuring the quality of providers care and incentivizing them based on that. There’s really a bit of disconnect, which is understandable when you look at from each perspective. We really need to look at the APCD through every single lens of each particular stakeholder, and what one stakeholder wants from another is not necessarily what they want for themselves. We have to be cognizant of that.

Going into this project we had very good ideas around hospital measurements and health plan measurements like the AHRQ [Agency for Healthcare Research and Quality] and NCQA [National Committee for Quality Assurance] measures. The biggest hurdle we have to address is the correct assignment of patients to providers. We have a contract in place with HealthInsight our local QIO [Quality Improvement Organization], chartered value exchange, and the holder of one of the Beacon Community grants. HealthInsight and we are in the process of moving our data from the APCD to them so they can do a provider-validation study. Because that is the very first step of making sure the providers are comfortable, so that if we’re going to report on their diabetes care or their immunization rank, we’re looking at the correct patients, so those measures are valid. If they’re not, the providers are going to ignore us.

HCI: What are the estimated cost savings from this project?

Allen: I think the healthcare savings are going to be found in a variety of places. The low-hanging fruit is obviously patient safety, and we’re reaching out to patient safety groups to look at that. Another low-hanging fruit is duplicate tests, and I think we can show evidence of that unnecessary care.

HCI: Will you be providing a Web-based summary database for consumers like other state APCDs? When will it launch?

Allen: New Hampshire actually has a really nice system up. They’re using their APCD to provide people with costs of preventative care. Right now, I think they have mammography and colonoscopy, those types of things, up. You can put your zip code and your health insurance in, and get a feeling for what your out of pocket costs would be if you go to Clinic A versus Clinic B for preventative care. That is the direction we want to move in. We’re not there yet. We’re probably realistically a year away from that, but I think if we have some resources to put into that the structure is there. New Hampshire is part of the APCD Council [Durham, N.H.], and they’re a partner of ours.

HCI: Was there anything that grabbed your attention at last week’s National Association of Health Data Organizations Annual Conference?

Allen: The APCD Council had a day and a half conference specifically on APCD projects. I think there were like 17 different states represented. It was just an amazing explosion of interest into this world. First of all, I think that interest in this has snowballed and made it easier for new states to come on. And so many states are now showing real benefits from putting together an APCD because it’s not cheap. We put ours together on $800,000, but most other states run theirs on seven figures.

The second thing I saw was the maturity of APCD projects, including ours who are now looking to link to other projects, connecting with the local RHIO with clinical information exchanges to add value and break down the walls of the silos. We don’t want the APCD simply to be just another data silo. States have very different takes on it. Some states have a specific purpose for their APCDs. Others, like ours, are kept more open. It’s interesting to see the different approaches.

HCI: What are the challenges with this project?

Allen: Historically, it was getting the funding. Because data is a tough sell. And this project has massive start-up costs, and so while you’re starting up, you have nothing to show. The way we addressed that was to show what other states were doing. And as more and more states come online, other states can point to the work being done and say, ‘That’s what we can do if given the money.’

The challenge that I am facing now is competing priorities. By that I mean, we don’t want to become a victim of our own success. Everybody now when they talk about a project, for health reform, health data, or health policy, or health research in Utah throws around the APCD as a source of data. And that’s the way I engineered it three years ago, but now what I’m faced with is a whole horizontal list of priorities from partners who all want to have APCD serve their purpose. But I also need to be very careful and not step on any toes, and don’t make anyone feel like they’re neglected. I also don’t want to lose sight on our primary mission to provide cost transparency for episodes of care in the state. I am so fortunate to have tremendous backing from the legislature, and they provide us with a priority list. When I’m really confused, they can help prioritize things. I also have the Utah Health Data Committee, my oversight group, made up of stakeholders; they provide leadership for our office. In a nutshell, I would say it’s maintaining focus on my primary objective, while trying to manage competing interests in the data. There are worse problems to have. Any time it gets overwhelming I just remember that Maine had to do this with no leverage and no traction at all, and I’m so tremendously grateful for the other states that came before us and allowed us to have the monumental political capital that we have right now.