Childhood obesity is a significant problem in America. While we have plenty of data to help find answers, it's hard to bring that data together. The Childhood Obesity Data Initiative aims to change that.
Nearly 14 million children in the U.S. are affected by childhood obesity. That prevalence has more than tripled since the 1970s.
Childhood obesity has serious lifelong consequences. Statistics show that children with obesity or at risk for it are more likely to suffer from adverse health risks such as high blood pressure, asthma, joint pain, depression, and anxiety. Children with obesity are also more likely to demonstrate poor academic performance and have negative peer interactions, including being victims of bullying.
These issues become harder and more expensive to manage when obesity continues into adulthood. Early and effective prevention and treatment are crucial to helping people live healthier, happier, and more productive lives.
The Role of Data in Solving Obesity
Unfortunately, the fight against this public health crisis has been constrained by many factors, including limited access to longitudinal data (that is, the same variables studied over time) collected in many different settings. Understanding which weight-intervention programs work for which populations requires the ability to follow children across both health and community settings over time. Without that critical data capability, progress to provide practitioners and researchers with data needed to monitor programs and outcomes in obesity will remain slow.
The Centers for Disease Control and Prevention (CDC) is on a mission to improve data capacity and address childhood obesity more effectively with the Childhood Obesity Data Initiative (CODI)—and MITRE is helping them get there by providing objective information, innovative technical solutions, and technical expertise.
CODI, funded by the HHS Assistant Secretary for Prevention & Evaluation (ASPE) through the Patient-Centered Outcomes Research Trust Fund, is a complex initiative developed to help solve a complex problem. CDC recognized the childhood obesity data challenge and launched CODI to come up with an innovative and efficient solution.
Many different factors—well beyond patient responses to questions about eating and exercise—play a significant role in childhood obesity. For example: Where do children receive healthcare? Do they have access to healthy foods? Do they live in a safe environment? Are they involved in any community programs?
All these individual-level factors and more directly influence children and families struggling with obesity, since obesity is a disease that affects the whole family. And every systemic and individual factor provides important childhood obesity-related data.
The problem is that data is collected in many different systems.
CODI's goal is to provide researchers and public health scientists with resources that give them access to key childhood obesity-related data. This will allow them to conduct the important research, evaluation, and public health surveillance that is necessary to gain a better understanding of this serious condition, and ultimately boost the spread and scale of evidence-based interventions.
“Having the ability to track and link that key data, over time, at an individual child's level can drastically improve our ability to understand, prevent, and treat childhood obesity,” says MITRE's Dawn Heisey-Grove, CODI project lead. “What's important to know is that the data already exist but has never been brought together in a meaningful way before. CODI will change that."
A glimpse into that change is coming in late 2020 with the first CODI pilot.
Building a Practical and Useful Solution
The CDC enlisted the help of clinicians, informatics specialists, program managers, public health scientists, and other key stakeholders from various organizations to join the CODI Collaborative. This group was hand-selected to inform, influence, and execute CODI. Having the intended end users involved throughout the entire process helped ensure the solution would be both useful and practical.
In partnership with the CDC and informed by the stakeholders, MITRE identified a common data model for childhood obesity research. This data extends well beyond typical demographics, clinical health outcomes, and census information. A child’s participation in a community program, weight-management intervention participant findings, and individual and community risk factors are among the other key data types selected by the collaborative.
Instead of building a whole new platform to gather the data, MITRE proposed innovative ways to use routinely collected data by clinical and community entities by enhancing existing information technology tools to form an integrated, user-friendly, privacy-protected set of resources.
“Being able to integrate existing information from health systems and community organizations via a resource such as CODI is a breakthrough to aid researchers to make real progress against the public health crisis of childhood obesity,” said CDR Alyson Goodman, MD, MPH, CODI project lead, board-certified pediatrician, and medical epidemiologist in the CDC Division of Nutrition, Physical Activity, and Obesity.
The CODI Pilot: A Key First Step
The CODI pilot is scheduled to launch in the summer of 2020 in the metropolitan area of Denver, Colorado. This pilot will assess CODI’s ability to improve data capacity for childhood obesity research.
Several key stakeholder organizations will take part, each with a specific role. Participants include MITRE, Denver Health and Hospital Authority, Kaiser Permanente Colorado, Children’s Hospital of Colorado, Girls on the Run of the Rockies, and Hunger Free Colorado, along with additional support from local, regional, and national partners.
Each partner brings a unique benefit to CODI. Organizations like Girls on the Run of the Rockies and Hunger Free Colorado, for example, are popular community programs that collect important information about weight-related interventions and services that isn’t likely to be found anywhere else because it's not tracked in typical health records.
CODI will allow researchers to link these data with clinical health records to create more accurate and comprehensive child health profiles.
This enhancement in data capacity has significant implications for the future of childhood obesity-related data. Researchers and providers will be able to better understand whether interventions work, align evidence-based interventions with the needs of patients and communities, and improve public health surveillance of childhood obesity.
“The goal is to use the pilot to refine and perfect CODI, and ultimately develop a blueprint to replicate the initiative in communities across the country,” says Peter Mork, MITRE’s chief data engineer for CODI. “When we are successful in that, and as CODI continues to grow, we expect to see a positive shift in our understanding of prevention and treatment of childhood obesity for generations to come.”
In addition to the pilot, CODI resources will be open source and available for others to implement beginning in spring 2020 and onward. For questions on open source materials or if you’d like to be a collaborator on the CODI initiative, email email@example.com.
—by Danielle Coates