UF’s Family Data Center is studying ways to prevent premature births

Little did she know that when Mildred Maldonado-Molina joined The Gator Nation 12 years ago, her career and research focus was about to take a very different path.   Maldonado-Molina, an associate professor in the Department of Health Outcomes and Biomedical Informatics, came to Gainesville from Penn State University.  Since joining UF, Maldonado-Molina has received multiple grants to study alcohol-related consequences in young people and ways to reduce health disparities among historically underserved communities.

“I joined UF’s Institute for Child Health Care Policy in 2005, looking to apply the methodologies I learned while at Penn State to research and improve child and adolescent health, including preventing premature births.  Globally, premature births are the leading cause of mortality of babies.  I wanted to understand where geographically the highest rates of infant and youth mortality was, and why…what indicators could we determine were contributing to these rates?”

The Family Data Center (FDC) is an interdisciplinary group of faculty and staff conducting research and assessing policies, programs, and outcomes at the state and national level.  The Family Data Center is integral to the research conducted by UF on behalf of the Agency for Health Care Administration (Agency).  By collaborating with the Agency, UF’s Family Data Center has access to 15 years of Florida data, which translates to billions of medical and administrative records and related health information, such as clinical records covering the mother’s prenatal care.  The records represent birth data from more than 300 hospitals covering all of Florida’s 67 counties.   Maldonado-Molina is passionate about the research her team conducts, and about the shift in focus from the customary factors usually tracked in this field of research:

“At the FDC, we want to shift the conversation from the traditional negative factors associated with premature births and development--like smoking and alcohol use--to positive developments that improve the outcomes for children, such as receiving adequate prenatal care, managing chronic diseases, and adopting a healthy diet/lifestyle during and after pregnancy. 

Most FDC research has been focused on a child’s first year of life.  We are expanding research collaborations, with the university’s Anita Zucker Center for Excellence in Early Childhood Studies and the Lastinger Center, analyzing data from birth through the child’s first five years.  This expansion is important because we want to identify areas that can indicate a child’s readiness to enter kindergarten. 

Kids who aren’t ready for kindergarten often aren’t ready for middle school.  Wouldn’t it be great if we can identify health behaviors and preventative measures needed at age five, rather than wait until a child is in the seventh grade?”

Evidence-based recommendations
What have the researchers found so far?

The University of Florida Institute for Child Health Policy (ICHP) analyzed the data of more than one million births in Florida between 2012 and 2016, and then geographically mapped the rates of newborns requiring neonatal intensive care (NICU).  Florida’s average rate of newborns requiring NICU support is 9.6 percent.  Of the 30 Florida counties with a higher-than-average percentage of infants who required NICU, 20 of those counties are located in North Florida.  The ICHP reported these findings to Florida’s Agency for Health Care Administration.  In addition to NICU, they also provided a list of 48 other maternal and child health indicators, which can be analyzed similar to NICU.

Another finding was that in 2016, 9.1 percent of children in Florida are born before 37 weeks, putting them at a significantly increased risk for developmental delays, disability, and death.  Since pre-term births are the leading contributor to death in infants, this data can be impactful in developing and funding new educational and medical outreach programs where they are most needed. Informing state administrators who can enact programs and policies that ultimately may lead to improved health outcomes and a better quality of care for mothers and babies in Florida. Access to this data is an opportunity for which Maldonado-Molina is very grateful.

“Before joining FDC, I worked with one data set of about 10,000 or so records.  I thought 10,000-15,000 records was large!   The populations that ICHP staff was studying were in the millions … and I was like, ‘You can do that?  This is available to us?!’  In partnership with multiple state agencies, ICHP and FDC has access to 15 years of Florida’s birth records, as well as associated health and prenatal care records of their mothers.  This is a 100-fold increase in data, which allows us to provide more robust conclusions.   

It was this shift—considering human development from a “population” level, above and beyond a “person” or “local community” level—that shapes my research now.”

For most of us, our checkbook ledger represents the most “rows of data” we will ever work with.  The ICHP and Family Data Center must not only store multiple terabytes of data but ensure the records they are entrusted with are safe from exposure. Medical records data is subject to specific protections under federal law.  Maldonado-Molina and clinical research manager Roland Estrella worked closely with staff from the UF Information Technology (UFIT) division to develop a solution that works for research that also complies with all information security and privacy laws.  

Estrella summarizes the process for building the secure, restricted data environment:

"We worked with UF Information Technology (UFIT) staff to develop a robust environment that meets the strict federal information security guidelines.  What we have now is a computing infrastructure that provides on-demand access to data from multiple state agencies and the capacity to process billions of medical and administrative records. We can work with the data and safely share research.”

The environment created with UFIT includes the use of the university’s ResearchVault, a highly secure environment for information and research that involves electronic protected Health information (ePHI) and requires compliance with the Health Insurance Portability and Accountability Act (HIPAA).  ResearchVault (also known as ResVault) provides a secure workstation for researchers to work with large-scale data storage and computation.  Through ResVault, UF researchers can securely store restricted data like electronic protected health information, export-controlled data, student data (FERPA), intellectual property data, and collaborate with other researchers on the same data sets.  The University of Florida is one of only a handful of universities across the country that have met the federal requirements for restricted data environments, enabling UF faculty to be more competitive when applying for grants from agencies like the NIH and the NSF.   Powering the research computations of these restricted data sets stored in ResVault is HiPerGator, the University of Florida supercomputer.  HiPerGator, brought online in 2013 by UFIT, is currently ranked as the third most powerful supercomputer at a U.S. public university.

Outcomes for Florida
Improving communities through data-driven planning

The analyses conducted by the FDC help to guide the state’s programmatic changes and policies.  The primary goal of the FDC is to develop intervention strategies that can be delivered to communities throughout Florida. 

Maldonado-Molina says UF will do this through the help and guidance of leading implementation scientists at the University of Florida. Some of their research outcomes are already being put in practice:

“One of our partners is the March of Dimes.  They help deliver the message derived from our research via direct outreach to the community.  And of course, the UF Health Pediatrics physicians, nurses, and staff is on the front lines of care, whether seeing patients in an office or via UF’s mobile clinics—they treat new and expectant mothers, and provide follow-up care and guidance.”

The University of Florida’s mission includes three interlocking elements:  teaching, research and scholarship, and service.  The outcomes provided by the Institute for Child Health Policy and the Family Data Center serves that mission in a most personal and urgent way:  improving the lives and future for the most vulnerable of Floridians.