Variation in Availability and Ability to Share Data in a Global Pediatric Emergency Medicine Research Network

James Chamberlain, Division of Emergency Medicine, Children's National Hospital.
Nathan Kuppermann, Departments of Pediatrics and Emergency Medicine, George Washington University School of Medicine and Health Sciences.
Lise E. Nigrovic, Departments of Pediatrics and Emergency Medicine, Harvard Medical School.
Simon Craig, Monash Medical Centre.
Adriana Yock-Corrales, Pediatric Emergency Department, Hospital Nacional de Niños ¨Dr. Carlos Saenz Herrera¨, CCSS, San José, Costa Rica.
Franz E. Babl, Department of Emergency Medicine, The Royal Children's Hospital.
Terry P. Klassen, Department of Pediatrics, College of Medicine, University of Saskatchewan and Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada.
Rianne Oostenbrink, Department of General Pediatrics, ErasmusMC-Sophia, Rotterdam, The Netherlands.
Suzanne Schuh, Division of Pediatric Emergency Medicine, Department of Paediatrics.
Todd A. Florin, Department of Pediatrics, Northwestern University Feinberg School of Medicine.
Stuart R. Dalziel, Departments of Surgery and Paediatrics: Child and Youth Health, University of Auckland.
Viviana Pavlicich, Department of Pediatrics, Hospital General Pediátrico Niños de Acosta Ñu.
Mark D. Lyttle, Emergency Department, Bristol Royal Hospital for Children.
Amy Plint, Department of Pediatrics, Children's Hospital of Eastern Ontario.
Santiago Mintegi, Pediatric Emergency Department, Cruces University Hospital, BioBizkaia Health Research Institute, Bilbao.
Silvia Bressan, Department of Pediatrics, University of Padova, Padova, Veneto, Italy.
Damian Roland, Department of Paediatrics, Leicester, Leicestershire and Rutland.

Document Type

Journal Article

Publication Date

10-1-2025

Journal

Pediatric emergency care

Volume

41

Issue

10

DOI

10.1097/PEC.0000000000003429

Keywords

clinical registry; collaborative research; data sharing; electronic health record

Abstract

OBJECTIVES: Electronic health record data holds promise for collaborative research involving very large sample sizes with diverse populations. We performed this study to determine, in an international network, the types of data available and the ease of obtaining such data, and to develop a qualitative understanding of privacy and data security regulatory frameworks. METHODS: We performed an electronic survey of members of the Pediatric Emergency Research Networks, a voluntary association of 8 research networks. The survey included (1) Likert scale responses for ease of obtaining specific data types; and (2) Likert scale and open-ended questions about barriers and enablers to sharing data internationally, including establishing ongoing clinical data registries. RESULTS: Of 263 surveyed, 127 (48%) responded. While ~25% of all sites can access data easily, more than 25% of sites reported moderate difficulty. Visit identifiers, patient identifiers (allowing tracking of patients longitudinally), and some emergency department (ED) visit data (eg, patient age, reason for visit, ED disposition, and ED length-of-stay) are generally easily obtained. Less easily available data include vital signs, clinical scores, medications, and laboratory and radiology results, which would require manual chart review at many sites. Some data are not collected at all in a substantial proportion of hospitals, including patient race, ethnicity, and preferred language. The regulatory framework around patient privacy and data security represented significant barriers to sharing data for some sites, including requiring informed consent to share data. CONCLUSIONS: Many research hospitals face significant barriers to sharing electronic health record data for research purposes.

Department

Pediatrics

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