Abstract
Data interoperability is crucial for effectively combining data for scientific inquiry. To facilitate interoperability, data standards such as a common definition of variables are often developed. The Open Data Commons for Spinal Cord Injury (odc-sci.org) has established an initial set of community-based data elements (CoDEs)—a minimal set of variables for sharing—to promote data interoperability in SCI research, aligning with FAIR (Findable, Accessible, Interoperable, and Reusable) data principles. We sought to understand the use of CoDEs by the SCI community to inform current standards adherence and future standards development. We systematically analyzed 39 public datasets in relation to 17 required CoDEs and found variations between reported data and the structure specified by the CoDEs. Overall, we found that the enforcement of data standards improved reporting rates of CoDEs variables. Notably, different variables were found to require different levels of curation to ensure semantic equivalence among datasets. We also uncovered specific reporting habits of researchers such as formatting and naming patterns. A need for different data standards based on the nature of the study (e.g., human study, derivative study) was realized alongside a detailed list of issues that should be addressed when implementing such standards. Among the various approaches to developing data standards, ODC-SCI adopted a semi-formal approach by creating standards that are easy to adopt by the user. Our data-driven evaluation of actual reporting behavior shows that this flexibility can lead to subsequent problems in harmonization. This study serves as a baseline analysis of reporting behaviors for shaping and facilitating data standards.
•Community-based data elements increases the potential for data harmonization in SCI.•Co-design of data standards is important for adoption and implementation.•Data repositories like the ODC-SCI can serve for real-world evaluation of data standards.