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

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 similar to 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.