ASCO has submitted comments to the National Institutes of Health regarding the role of data standards in biomedical science. The comments were in response to a Request for Information from the National Cancer Institute, Input on Information Resources for Data-Related Standards Widely Used in Biomedical Science (notice number NOT-CA-14-053).
ASCO’s Health Information Technology Work Group and Data Standards and Interoperability Taskforce has worked on developing interoperable standards. Standards development work is costly and time-consuming, and dissemination remains a challenge.
ASCO offered the following specific suggestions for additional types of standards most critical to include in the NIH Standards Information Resource (NSIR):
There is a critical need for standards for genomic data, with raw data entry, interpretation including storage algorithms and statistical algorithms, and storage to keep raw primary data for future analysis (eg, in the case of an initial solution which is adopted and then found to be incorrect, insufficient, or immature for subsequent analysis).
A source of most standards in biomedicine is the National Centers for Biomedical Computing’s BioPortal site with approximately 384 ontologies; this is helpful because all of the different ontologies are contained within one site for easy access and ranked in terms of specific review criteria. Submission to a similar site could be required for all ontologies going forward, and an analogous site evaluating commercial solutions/standards in terms of these ontologies could be established.
We suggest that all standards for use by oncologists be submitted to the National Library of Medicine’s Unified Medical Language System. This will require that standardization of raw data, interpretation, and algorithmic tools all are available at one site for better accessibility. Thus, we very strongly support the formation of the NSIR. We believe that such a resource would be invaluable to organizations engaged in standards development, as well as primary and secondary users of data generated through the use of standards. A central, vetted repository containing the metadata proposed by NIH would be highly useful for specialty areas such as oncology, as well as medicine more generally.
Read ASCO’s full comments at www.asco.org/sites/www.asco.org/files/nih_biomedical_data_standards_rfi.pdf. ■
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