GloPID-R Roadmap for Data Sharing in PHEs | Page 19

TIMELY: CHALLENGES & POTENTIAL SOLUTIONS THRESHOLDS FOR RAPID DATA SHARING Pathogen Genetic Sequence Data and associat- ed metadata for all outbreaks (prior to PHE). A potential bottleneck has been identified in the GloPID-R funders’ policies through linking the trigger for their rapid data sharing policies to the WHO definitions of a PHE or even PHEIC. What constitutes a PHE may not be clear. There are also many outbreaks or epidemics and even inter-epidemic periods (for epidemic prone pathogens that are of public health interest) where rapid data sharing of early research con- ducted may enable a response which ultimately prevents a PHE or PHEIC. Discrete thresholds for enhanced data sharing need to be developed for research on certain epidemic prone pathogens. Rapid data sharing requirements for all research on outbreaks of novel/ emerging pathogens and pathogens with high epidemic potential could be considered (potentially linked to the WHO R&D blueprint priority pathogen list 23 ) whether or not there is currently a PHE. The WHO has already pro- vided guidance on the importance of sharing COMPLEXITY OF DATA SHARING The useful data during a PHE can be highly complex. There is heterogeneity in the nature of the data being collected (e.g. epidemiological, clinical, and genetic) and varying format and content across these. There are also varying purposes of data collection (public health and research) and distinct data needs from different users. Harmonising data across these domains, formats and contents requires significant invest- ment, which delays the utility of shared data. Standardised data collection tools will further support consensus on which data should be prioritised for collection and ensure that key outcomes are measured to enable cross-analy- sis. Further development of and use of generic meta-data standards (such as those devel- oped through the Clinical Data Interchange 19