Sizing the Problem of Improving Discovery and Access to NIH-Funded Data: A Preliminary Study

TitleSizing the Problem of Improving Discovery and Access to NIH-Funded Data: A Preliminary Study
Publication TypeJournal Article
Year of Publication2015
AuthorsRead, K. B., Sheehan J. R., Huerta M. F., Knecht L. S., Mork J. G., Humphreys B. L., & Group NIH. Big Data A.
JournalPLoS ONE
Volume10
Issue7
Paginatione0132735
Date Published2015/07/24/
Keywordsgap_evidence, gap_relationships, sg_data_definition, sg_data_discovery, sg_data_methodology, sg_data_universe, sg_instrument, sg_journals
Abstract

Objective: This study informs efforts to improve the discoverability of and access to biomedical datasets by providing a preliminary estimate of the number and type of datasets generated annually by research funded by the U.S. National Institutes of Health (NIH). It focuses on those datasets that are "invisible" or not deposited in a known repository. Methods: We analyzed NIH-funded journal articles that were published in 2011, cited in PubMed and deposited in PubMed Central (PMC) to identify those that indicate data were submitted to a known repository. After excluding those articles, we analyzed a random sample of the remaining articles to estimate how many and what types of invisible datasets were used in each article. Results About 12% of the articles explicitly mention deposition of datasets in recognized repositories, leaving 88% that are invisible datasets. Among articles with invisible datasets, we found an average of 2.9 to 3.4 datasets, suggesting there were approximately 200,000 to 235,000 invisible datasets generated from NIH-funded research published in 2011. Approximately 87% of the invisible datasets consist of data newly collected for the research reported; 13% reflect reuse of existing data. More than 50% of the datasets were derived from live human or non-human animal subjects. Conclusion In addition to providing a rough estimate of the total number of datasets produced per year by NIH-funded researchers, this study identifies additional issues that must be addressed to improve the discoverability of and access to biomedical research data: the definition of a “dataset,” determination of which (if any) data are valuable for archiving and preservation, and better methods for estimating the number of datasets of interest. Lack of consensus amongst annotators about the number of datasets in a given article reinforces the need for a principled way of thinking about how to identify and characterize biomedical datasets.

URLhttp://dx.doi.org/10.1371%2Fjournal.pone.0132735
Short TitlePLoS ONE

Gap Area Study Type:

Purpose: 
Investigated the discovery of and access to biomedical datasets to provide a preliminary estimate of the number and type of datasets generated annually by research funded by the U.S. National Institutes of Health (NIH); specifically those that are “invisible” or not deposited in a known repository
Method: 
Analyzed NIH-funded journal articles that were published in 2011, cited in PubMed and deposited in PubMed Central (PMC) to identify articles where data were submitted to a known repository; excluded these and analyzed a random sample of the remaining articles to estimate how many and what types of invisible datasets were used in each article