Dr. Matthew Castner is a Director at Discern Health, where he leads health care reform and value-based care pr... Read Bio
The Healthy People 2020 action plan launched by the U.S. Department of Health and Human Services includes goals to increase access to population-level data sources and activities, and to establish data systems to support evaluation of interventions. Although there are national recommendations for childhood obesity prevention and treatment, gaps exist in information about how, why, where, and when such interventions work best for different populations of children. To address these challenges, the Childhood Obesity Data Initiative (CODI) is building data capacity for research that assesses strategies to prevent and treat childhood obesity. CODI will integrate existing data resources so that researchers can: 1) assess and compare effectiveness of different childhood obesity prevention and treatment interventions, and 2) address identified gaps in childhood obesity research that relate to the ability to tailor interventions for children and families in the context of important sociodemographic, health, and community factors.
This panel discussed how CODI will leverage several innovative techniques to accomplish its goals. The first panelist, Dr. Alyson Goodman, established the research questions that the CODI infrastructure is designed to answer and provide high-level overview of the CODI data model and how it aligns with existing PCORnet and other common data models. The CODI infrastructure is designed to permit non-clinical partners to contribute data for research, evaluation and surveillance, and Dr. Goodman shared the progress CODI is making to incorporating non-clinical partners into the first CODI pilot.
The principles of PCORnet are to allow participating organizations to contribute data for research purposes while maintaining patient privacy. This presents a challenge for queries that need information on patients across organizations because many PCORnet networks do not exchange personally identifiable information (PII). The second panelist, Dr. Peter Mork, discussed how CODI addresses this challenge using Privacy-Preserving Record Linkage (PPRL). PPRL transforms PII so that what leaves organizations’ firewalls is not clear-text PII and is virtually impossible to connect back to the patient.
The final presenter, Ken Scott, discussed experiences with implementing CODI currently and his perspectives as a future end user of the infrastructure. The process of linking data and coordinating the exchange of such information requires a trusted third party and coordinating center. He reviewed the challenges and best practices that CODI is leveraging to create data use and sharing agreements.
At the conclusion of the session, participants will be able to:
- Understand the type of research that can be conducted using CODI
- Understand how CODI identity management will preserve patient privacy while leveraging a distributed network infrastructure
- List the best practices around establishing data sharing agreements to support multi-organization data sharing using PPRL
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