Longitudinal observational clinical data on pediatric patients in electronic format is becoming widely available. A new era of multi-institutional data networks that study pediatric diseases and outcomes across disparate health delivery models and care settings are also enabling an innovative collaborative rapid improvement paradigm called the Learning Health System. However, the potential alignment of routine clinical care, observational clinical research, pragmatic clinical trials, and health systems improvement requires a data infrastructure capable of combining information from systems and workflows that historically have been isolated from each other. Removing barriers to integrating and reusing data collected in different settings will permit new opportunities to develop a more complete picture of a patient’s care and to leverage data from related research studies. One key barrier is the lack of a common terminology that provides uniform definitions and descriptions of clinical observations and data. A well-characterized terminology ensures a common meaning and supports data reuse and integration. A common terminology allows studies to build upon previous findings and to reuse data collection tools and data management processes. We present the current state of terminology harmonization and describe a governance structure and mechanism for coordinating the development of a common pediatric research terminology that links to clinical terminologies and can be used to align existing terminologies. By reducing the barriers between clinical care and clinical research, a Learning Health System can leverage and reuse not only its own data resources but also broader extant data resources.
Skip Nav Destination
Article navigation
March 2014
State-of-the-Art Review Article|
March 01 2014
Building a Common Pediatric Research Terminology for Accelerating Child Health Research
Michael G. Kahn, MD;
aDepartment of Pediatrics, University of Colorado, Aurora, Colorado;
Address correspondence to Michael G. Kahn, MD, PhD, Department of Pediatrics, University of Colorado, c/o Children’s Hospital Colorado, 13123 E 16th Ave, B400, Aurora, CO 80045. E-mail: michael.kahn@childrenscolorado.org
Search for other works by this author on:
L. Charles Bailey, MD;
L. Charles Bailey, MD
bChildren’s Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania; and
Search for other works by this author on:
Christopher B. Forrest, MD;
Christopher B. Forrest, MD
bChildren’s Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania; and
Search for other works by this author on:
Michael A. Padula, MD;
Michael A. Padula, MD
bChildren’s Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania; and
Search for other works by this author on:
Steven Hirschfeld, MD
Steven Hirschfeld, MD
cEunice Kennedy Shriver National Institute of Child Health and Human Development, Bethesda, Maryland
Search for other works by this author on:
Address correspondence to Michael G. Kahn, MD, PhD, Department of Pediatrics, University of Colorado, c/o Children’s Hospital Colorado, 13123 E 16th Ave, B400, Aurora, CO 80045. E-mail: michael.kahn@childrenscolorado.org
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
Pediatrics (2014) 133 (3): 516–525.
Article history
Accepted:
October 01 2013
Citation
Michael G. Kahn, L. Charles Bailey, Christopher B. Forrest, Michael A. Padula, Steven Hirschfeld; Building a Common Pediatric Research Terminology for Accelerating Child Health Research. Pediatrics March 2014; 133 (3): 516–525. 10.1542/peds.2013-1504
Download citation file:
0 Comments
Comments Icon
Comments (0)
Sign in
Don't already have an account? Register
Pay-Per-View Access
$25.00