Clinical and Community Data Initiative

The issue

Impact of chronic disease

Chronic diseases, such as heart disease, cancer, diabetes, and obesity, are the leading causes of death, disability, and high annual health care costs in the United States. These diseases are linked to many factors that influence health, including where people live, learn, work, and play.

Being able to analyze data in a way that links health behaviors, interventions, and outcomes to community services and other factors that influence health is vital to reduce chronic diseases and achieve health equity. CODI works with clinical and community organizations to improve the use of data for understanding health.

Data challenges

Communities track and store information about factors that influence health. This may include data about health status, health care, and community supports and services. Common challenges of data stored across different settings include standardizing, linking, and sharing individual health-related information in a way that preserves privacy.

Locally owned infrastructure supports community efforts to improve health and achieve health equity using data-driven approaches. CODI uses existing information technology tools in new ways so that individual data can be linked across clinical and community organizations.

CODI solutions

CODI brings together data stored across different organizations to create individual-level, linked longitudinal records that include factors that influence health, clinical and community interventions, and health outcomes. CODI also creates longitudinal household records, linking individual longitudinal records within the same household.

CODI engages:

• People: local individuals, organizations, collaborations.
• Processes: data assessments, business processes, sharing, governance.
• Technology: record linkage, data models, analytic tools.

Broader access to standardized data

CODI builds on existing common data models (CDMs) by adding new standardized data tables and elements related to geography, clinical and community programs, and other factors that influence health.

Linking records while preserving privacy

CODI links individuals' health records in existing information systems while protecting personally identifiable information. To preserve patient privacy, information is encoded in a secure format behind each organization's firewall. This process is called data hashing. CODI uses these hashed data to link records across settings and information systems.

Distributed Health Data Network

CODI functions as a Distributed Health Data Network (DHDN). A DHDN allows participating organizations to ask a question about the data that is then translated into a query and sent to the clinical and community partners via a Data Coordinating Center (DCC). The DCC assembles and returns a dataset to the participating organizations with linked, longitudinal records that do not include any personally identifiable information.

By querying data linked together by CODI, program managers, practitioners, researchers, and others can evaluate the local impact of disease. They can also examine the impact of a service or an intervention on the health and well-being of individuals and households over time.

CODI toolbox

The CODI virtual toolbox provides free, public access to tools created or used as part of CODI. Researchers, network partners, legal staff, implementers, and participants may find the CODI toolbox useful. The toolbox includes:

• Documentation of processes, such as the governance model.
• Standards, such as the data model.
• Tools, such as growth data cleaning algorithms and queries.

Implementing CODI

In 2018, CODI was first implemented in Denver, Colorado (CODI-CO) with the existing Colorado Health Observation Regional Data Service. CODI-CO linked child health-related data from:

• Three health systems:
  • Denver Public Health and Hospital Authority
  • Children's Hospital Colorado
  • Kaiser Permanente Colorado
• Two community-based organizations:
  • Girls on the Run of the Rockies
  • Hunger Free Colorado

Analytic results provide information about:

• Growth and clinical action for children with excess weight.
• How contact hours and frequency of participation in weight management interventions affect health.
• Local child obesity prevalence.

In 2020, CODI expanded to North Carolina (CODI-NC). Local collaborators are working with health care providers, local and state health departments, and community-based organizations. They work in the state's Triangle region which includes Raleigh, Durham, and Chapel Hill.

Beginning in 2021, both CODI-CO and CODI-NC further optimized the CODI infrastructure to assess factors that influence health in addition to collecting data about child and adult chronic diseases.

In late 2023, the Administration for Community Living funded a data linkage project using CODI tools in Maryland. It focuses on health-related social needs and older adults.

To learn how your organization or community can benefit from CODI, contact CODI@cdc.gov.

CODI was supported in part by the Office of the Secretary Patient-Centered Outcomes Research Trust Fund through an interagency agreement between the Office of the Assistant Secretary for Planning and Evaluation (ASPE) and CDC.