The development of an integrative data system has helped Rhode Island combine data across multiple platforms and drive analytic strategies that promote better health throughout the state.
An integrated data system is allowing officials in Rhode Island to develop a more thorough understanding of the health needs of residents.
The usefulness of healthcare big data — that is, the ability to create a more holistic view of individuals and populations — depends on the ability of stakeholders to share data sets across systems and institutions. Yet, data from one department within an organization is often not cohesive with data from another. Trying to analyze patterns in benefits, health care utilization, and social services is, therefore, hindered by a lack of data liquidity.
In Rhode Island, government agencies worked together to create the Executive Office of Health and Human Services (EOHHS) Data Ecosystem. This integrated data system blended data sources from multiple organizations to help create a holistic view of Rhode Islanders.
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The goal of the Data Ecosystem is to help agencies improve their performance and understand the individuals they serve, said Director of Data and Analytics at Rhode Island Executive Office of Health and Human Services, Kim Paull.
Take a Medicaid member, for example. There is a given definition of what it means to be a Medicaid member based on the state benefits that an individual receives. But, this does not define the individual.
“No matter how a Medicaid member enters the health and human services system, we want to ensure that that person is served holistically,” Paull said. “An individual might seek out general public assistance through the Department of Health but could also qualify for veterans’ benefits. It’s our job to use data to tell a person’s complete story and then connect them to benefits that span several agencies.”
Integrating data sources can be challenging especially given the issues of an individual’s privacy and data ownership.
“We take very seriously the responsibility that comes with having data and integrating it across our agencies,” Paull insisted. “In addition to best practice security and stripping information that could identify an individual, we engage in conversations and processes that help build trust and consensus about the data sharing.”
Protecting an individual’s privacy is of the utmost importance to those who work with the Data Ecosystem. Paull noted that this is made easier when ownership of the data is clearly defined between agencies.
“We ask agencies for guidance and approval on the major efforts that we undertake in cooperation with them,” she stated.
The agencies whose data is integrated into the system remain the owners of that data, helping to drive the analyst’s best practices and provide expertise for interpreting results.
“They have ownership of the data so that it never really leaves their control,” Paull explained. “We could take the easier, shorter path of saying, ‘We require you to give us all your data,’ and find a legal way to do that. But that’s a path fraught with failure. It’s not ethical and doesn’t create partners.”
These partnerships and data integration have allowed the EOHHS to conduct unique analysis that has driven multiple interventions across agencies.
For instance, analysts wanted to understand the factors that correlated with child physical and emotional abuse and neglect.
“One of the findings was that it’s very clear that children who were not receiving primary care, the right routine primary care visits, recommended for early intervention or family home visiting but not enrolled, had a higher correlation with incidents of maltreatment,” Paull revealed.
EOHHS is also analyzing drivers for individuals seeking medication-assisted treatment (MAT) for opioid use disorders. As a part of this work, the team is conducting a qualitative assessment of individuals who are in recovery who have and have not used MAT.
“We’re looking at things like transportation barriers by mapping out bus stops against where methadone clinics and buprenorphine prescribers are located,” Paull noted. “We’re also looking at any connection between whether being employed impacts a populations’ decision to seek out medication-assisted treatment.”
The analysis conducted through the use of the Data Ecosystem also benefits from the use of personal anecdotes from the individuals they are trying to understand.
“Our projects have gone well because we’ve had an advisory group that not only includes our various research teams but people who were part of our data set,” Paull noted. “When possible, it’s invaluable to involve the very population you are studying and who could be affected by your findings. Their understanding is critical,” Paull added.
Paull emphasized that the research conducted using the Data Ecosystem should not perpetuate misconceptions about the subjects of analysis.
“There’s a lot of things you can study, but can they be done without being disrespectful to your subjects? Can they be done without perpetuating a bias?” she explained. “And, most importantly, are they being done with the goal of improving how society cares for its most vulnerable. That’s the bottom line. Will this study help our fellow man or woman?”
“The nature of some studies requires your organization, a team member or, maybe, a consultant to have a strong understanding of data ethics,” emphasized Paull.
Paull attributed the success of the project to the top-down approach used to generate agency buy-in. The state received a federal state innovation model grant in 2014 with $1.6 million in funding to help springboard implementation of the Data Ecosystem
“This provided rocket fuel to get the project off the ground,” Paull noted. “We had the foundational legal agreement with partners signed very quickly. The process was aided by amazing executive buy-in from the state and our partners.”
While funding provided EOHHS with the resources needed to run the project, this was not the only thing that motivated the program to its success.
“More importantly, you need a compelling reason to embark on such endeavors. You don’t want this data resource as a ‘nice to have,’” Paull said. “The fruits of this work must be essential to your organization’s mission. In this field that means it’s essential to improving the health and quality of life of our residents.”
“Appreciating the power of data is a core responsibility of anyone practicing in data integration,” Paull concluded.
Date: August 30, 2019
Source: Healthit Analytics