CoMeCT recommendations for the adoption of health research data standards by European emerging infectious disease-focussed cohorts and trials: a summary of findings from a cross-sectional survey

Health research data standards are crucial
for ensuring data consistency, enabling collaboration, and accelerating
discoveries, especially in the research response to emerging pathogens like
COVID-19 or Monkey Pox. This study surveyed European funded, emerging
infectious disease-focused clinical trials and cohort consortia to understand
their use of and challenges with health data standards. Findings revealed that,
while some groups use data standards like International Classification of
Diseases (ICD) and Systematized Nomenclature of Medicine Clinical Terms (SNOMED
CT), many researchers face barriers to implementing standards including lack of
expertise, unclear benefits, and insufficient funding. Trial and cohort
consortia recommended providing more training, mandating standards use and
offering clear guidelines for researchers as pathways for European funders to
improve standards uptake in the health research space. Implementing these steps
can help make health research data more accessible and reusable, improving the
research response to emerging pathogens.