Database for Surveillance Research and Innovation

 /en-us/PublishingImages/AAPLogos/CHPHC_Logo_03.png
-A   +A

Database for Surveillance, Research, and Innovation

CHD Database Landscape
 

In the United States, medical data is not available on a widespread national level. Medical data is stored on numerous, separate databases, making it difficult to obtain answers to medical questions on specific populations, including the congenital heart defect (CHD) population. As a result, the Congenital Heart Public Health Consortium (CHPHC) has grouped examples of U.S. and Canadian databases into data source types (administrative health care, birth defect surveillance, clinical, survey and vital records). The goal is to educate researchers, funding decision makers, clinicians and the public about the various data sources, as well as CHD research and surveillance opportunities.

Databases and registries contain an abundance of data encompassing many aspects of overall cardiac care, including clinical, surgical, critical care, anesthesia, and administrative CHD information. However, separate data sources have contributed to knowledge gaps in the prevalence, long-term outcomes and delivery of health services related to CHDs. Combining databases would be ideal, but understanding the characteristics of these databases will improve access to appropriate information

Databases for Congenital Heart Defect Public Health Studies Across the lifespan

The article "Databases for Congenital Heart Defect Public Health Studies Across the Lifespan" (JAHA, October 2016) sheds light on the complex constellation of databases that include CHD data. The article articulates a framework with database categories and examples as well as opportunities to combine databases across categories.

  • Table 1. Administrative Healthcare Database Examples in the United States and Canada With Data From 1990 Onward for Potential Use in Congenital Heart Defects Public Health Investigations
  • Table 2. Birth Defects Surveillance Database Examples in the United States and Canada With Data From 1990 Onward for Potential Use in Congenital Heart Defects Public Health Investigations
  • Table 3. Clinical Database Examples in the United States and Canada With Data From 1990 Onward for Potential Use in Congenital Heart Defects Public Health Investigations
  • Table 4. Survey Database Examples in the United States and Canada With Data From 1990 Onward for Potential Use in Congenital Heart Defects Public Health Investigations
  • Table 5. Combined Database Examples in the United States and Canada With Data From 1990 Onward for Potential Use in Congenital Heart Defects Public Health Investigations

Linkage of Databases

The 2013 paper "Public Health Science Agenda for Congenital Heart Defects: Report from the Centers for Disease Control and Prevention Experts Meeting​" (Oster et. al. J Am Heart Assoc., 2013) identifies several strategies to address gaps in public health knowledge of CHDs.

According to the report, linking the various databases would leverage the wealth of data that has already been collected, rather than creating new databases.

While none of the databases are tracking long-term CHD outcomes, merging information across databases may provide valuable long-term outcomes data. Although this strategy could be challenging, the potential positive impact is great. In addition to learning about patient-level outcomes for individuals with CHDs, linking databases may help identify benchmarks for care and inform screening and prevention efforts.

Education and Resources​

Digging Deeper with Data is Essential to Understanding Congenital Heart Disease 
This one-page educational handout ​articulates barriers, challenges and actionable activities regarding the use of data for public health outcomes for children, youth and adults living with CHD. In the era of "big data," numerous data sources are available and could be used to evaluate health outcomes, establish standards of care, and identify opportunities to advance care.

Databases for Congenital Heart Defect, Public Health Science, Overview and Applications Webinar
This webinar provides an overview of the CHPHC's focus on databases. Tiffany Colarusso, M.D., and Kathy Jenkins, M.D., M.P.H., present the key aspects of databases for public health, detail the different categories of databases, and discuss gaps and opportunities for using databases to improve public health science.
View Recorded Webinar (May 2014)

Additional Information and Resources

            print           email           share
Advertising Disclaimer