Integrating longitudinal data from community-based organizations with electronic health record information can improve data accessibility and use to understanding health. Lessons learned from the Childhood Obesity Data Initiative.
The September study in the Morbidity and Mortality Weekly Report (MMWR) reveals that many US children gained more weight than expected during the pandemic, which highlights the importance of addressing children’s health challenges. Community organizations play a key role in healthy childhood weight by providing access to healthy foods and opportunities for physical activity; however, information about how children and families participate in community programs and access community supports is difficult to access and rarely incorporated in research and surveillance. Integrating longitudinal data from community-based organizations with electronic health record information can improve data accessibility and use to understanding health. The Childhood Obesity Data Initiative (CODI) provides a framework to collaboratively develop a distributed network infrastructure that links deidentified patient records to community data with a goal to enhance data capacity for research, public health surveillance, program evaluation, and participant tracking.
Between 2018–2020, the Centers for Disease Control and Prevention supported a pilot CODI implementation with three health care systems and two community partners in the greater Denver Metro Area. CODI uses privacy preserving record linkage (PPRL) to harmonize data across organizations for a single patient; PPRL was selected for record linkage because it provides governance advantages and allows organization to retain control over personally identifiable information. The CODI technical architecture was integrated into an existing regional distributed network (the Colorado Health Observation Regional Data Service or CHORDS). Leveraging an existing distributed network offered substantial efficiency during implementation: partnerships had already been established, processes were defined, and stakeholders were experienced with distributed architecture and record linkage concepts.
CODI’s implementation of rapid innovation was successful but not without challenges. CODI prioritizes both partnerships and innovation, and lessons learned on both fronts during this pilot are captured in two publications published ahead of print in the Journal of Public Health Management and Practice (JPHMP).
Read:
- The Childhood Obesity Data Initiative: A Case Study in Implementing Clinical-Community Infrastructure Enhancements to Support Health Services Research and Public Health
- A Governance Framework to Integrate Longitudinal Clinical and Community Data in a Distributed Data Network: The Childhood Obesity Data Initiative
Collaborative engagement of stakeholders early and often was critical to ensure an understanding of the project objectives, current state of technological capacity, approved data use, and the desired future state of CODI architecture. A governance framework that protects individual privacy, accommodates organizational data stewardship requirements, and complies with laws and regulations was developed and carried out to support the harmonization of data from disparate clinical and community information systems.
CODI brings together local people (individuals and organizations), processes (data assessments, data sharing, and governance) and technology (record linkage, data models, analytic tools) to create a local infrastructure that supports community efforts to achieve data-driven approaches to improve health and achieve health equity. This infrastructure is intended to be locally owned and sustained to support its community. CODI in Colorado has been sustained through the CHORDS network, and a second CODI site in the North Carolina Triangle Region has begun. From 2020 to 2022, both sites will add critical information on adults, additional chronic diseases, COVID-19, social determinants of health, and household linkages. For more information and technical assistance to implement CODI in your community, please contact codi@cdc.gov.
Related Articles:
