Overcoming Data Governance Challenges in HHS

Multi-agency collaborative efforts key to attaining benefits of ACA, say officials speaking at the State Healthcare IT Connect Summit.

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Bringing state health agencies together to work on technology projects related to the Affordable Care Act promises to break down silos and present a holistic, person-centric view of each citizen, no matter which agency door they walk through. But getting there requires data governance teamwork. At the State Healthcare IT Connect Summit in Baltimore on April 1, health IT leaders from several states discussed the challenges they are trying to overcome. 

Sean Vinck, CIO of the State of Illinois, teamed up with Kathleen Monahan, executive director of the Illinois Framework Project, to talk about their effort to create a multi-agency collaborative to share technology and business processes among 60 programs in seven health and human services agencies. 
 
“These seven agencies have signed an agreement committing themselves to the idea,” Monahan said, which means agency directors don’t own their data anymore. "The state owns it. We want them to think about data as an asset to be used to benefit the state and not kept or owned by an agency,” she continued. “One of the first things we did was bring together agency general counsels to begin discussions of how to start sharing data.”
 
During a separate panel discussion, Rex Plouck, portfolio manager in the Ohio Governor’s Office of Health Transformation, said a few years ago Ohio health agencies struggled to work on enterprise data governance. “Agencies were trying to work together, but it came down to attorneys slowing things down working on contracts between agencies,” he said. But recent legislation clarified that projects sponsored by the Office of Health Transformation don’t have to have those types of legal contracts replicated in data-sharing agreements. That has sped up data and resource sharing, he added.
 
Vinck said recently passed legislation in Illinois, House Bill 1040, created an open data platform and regulatory architecture. “It requires us to make architecture choices that are presumptively open about data we collect,” he said. “It also requires agencies to plan application development to follow the federal cloud-first model.”
 
Monahan said her organization has developed a governance structure and handbook for its executive steering committee, which includes a set of attributes of good governance they could agree upon. “Now when they discuss tough issues, they have ground rules,” she said. "And we only bring them together when we have something really challenging for them to work on.” Steering committee members face a bigger challenge taking data-sharing plans back to their agency to get 2,000 employees to go along with it, she noted.
 
Vinck added that all the state agency silos grew up because the agencies report up to the federal agencies that fund them. “We brought in representatives of three federal agencies that fund health and human services programs at the state level, and it was the first time they had met each other. So it is difficult to corral all the cats at the state level, but we also have to corral them at the federal level, too.”
 
Sonny Bhagowalia, chief advisor for technology and cyber-security for the State of Hawaii, talked about the state’s health-care transformation plan developed during a six-month planning process made possible by a federal grant from the federal Center for Medicare and Medicaid Innovation. Among its goals are enrolling at least 80 percent of state residents in a patient-centered medical home by 2107, and implementing programs to help high-risk/high-need individuals by establishing Medicaid Health Homes and Community Care Networks.
 
The transformation relies on an enterprise architecture that allows data sharing and analytics to feed back into the system for improvements. 
 
“At the end of the day, business process re-engineering and governance are the hardest issues to work through in state government,” Bhagowalia said. “What is needed is a will to drive collaboration. This is solvable.”
 
During another panel about health insurance exchanges, leaders from Connecticut and Rhode Island both said their organizations had initially deferred building data warehouses until their systems were up and running, so their analytics capabilities are limited so far. “We hope to have that completed by the July time frame,” said James Wadleigh, CIO of Access Health Connecticut. Initially, data analysis will help the organization understand the demographics of who signed up to assist with marketing for the next open enrollment period, he said. But in the long run, the data can help educate consumers. Connecticut is creating an all payer claims database, he said, which will help the state share information with customers about cost and quality and could help drive costs down.
 
Brenda Gleason, special advisor to HealthSource R.I., said her state’s leaders are thinking in terms of a 3- to 5-year time frame. Rhode Island has an all payers claims database and is working on adding Medicaid data and data from the new insurance exchange. She said the state would like to identify new variables it could measure that touch on public health, such as work and school absenteeism. “If we could look at those figures before the exchange opened as the baseline and look at it three years later,” she said, “perhaps we could identify improvements that we could attribute to more people being covered.”
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