EVS supports a broad community of users, growing from its core mission of meeting NCI terminology needs to also support community-driven standards for data exchange and interoperability in clinical trial, research and other activities. Over the last dozen years, this community has contributed to EVS content, technology, and dissemination, achieving results beyond what the individual participants could have achieved separately.
This document briefly outlines EVS resources; collects available statistics, for both NCI and related systems, to capture the level, composition, and nature of use; and then fleshes this out with operational details, user profiles and other information, including top users of specific resources. Each section focuses on a particular topic, with selected highlights gathered here.
- EVS terminology content, standards and technology are adopted and actively used by many organizations and communities, some directly involving tens of thousands of users. Examples include the following:
- Clinical trial programs such as CCOP, which uses NCIt to code the care of 85,000 patients.
- TCGA content, used by at least 59 academic, commercial and non-profit organizations in 25 studies.
- caNanoLab, still heavily used with more than 420,000 visitors since June 2011.
- NIH use such as at NICHD, which employs NCIt pediatric terminology for the coding of 848 clinical trials, used by 52 different academic and research organizations.
- Many of these standards extend beyond the NCI and NIH community, and are jointly developed with and adopted by outside agencies and standards organizations that shape NCI's research environment. Examples include the following:
- NCIt content has become a regulatory standard through shared use by FDA, CDISC and others, such as for drug submissions and Therapeutic Area Standards.
- FDA reported receiving 14,014 electronic submissions using NCIt-based regulatory coding between Oct. 2009 and September 2010; such submissions have likely grown substantially since.
- NCPDP use of NCI's drug standard terminology extends to some 200 vendors serving approximately 15,000 pharmacies with more than 4 billion annual transactions nationwide, including large providers such as First DataBank and Surescripts, the nation's largest e-prescriber.
- Surescripts alone connects thousands of pharmacies across the US, and is connected to the largest network of payers and Medicaid Fee for Service payers nationwide.
- Numerous academic, research, and even commercial organizations are also using and extending the capabilities of LexEVS and other EVS tools, for use throughout their organizations and for the development of commercial products.
Shared Terminology Development
- Over the last 10 years, NCIt has been adopted by FDA, CDISC, NCPDP and other partners as a shared framework for developing terminology standards, allowing participants to compare and harmonize with each other's content while taking advantage of full-text definitions, codes, and other features.
- About 40% of the 120,000 current NCIt concepts have terms from both EVS and from one or more of these other sources.
Use of EVS Servers
- Monthly ftp downloads of EVS terminology files have grown from 75,000 monthly in the first half of 2014 to more than 100,000 monthly in 2015 and 2016, not including downloads from CDISC, FDA, and other non-EVS servers.
- EVS browsers, using LexEVS local APIs, are used each month by about 3,500 unique visitors making more than 6,000 visits.
- Top users include NCI (CBIIT and others), various parts of NIH, FDA, many universities and biomedical companies, and other biomedical organizations.
- LexEVS distributed (remote) APIs are used by an average of 60 unique "visitors" making some 500 visits monthly; these are mostly applications, including many at NCI and NIH as well as at universities and biomedical research organizations.
- The Term Suggestion site has about 110 unique visitors with 180 visits monthly, often suggesting changes or additions involving multiple terms.
Use of EVS Content on Select Non-EVS Servers
- Over 30,000 unique visitors account for some 70,000 page views monthly on the NCI Drug Dictionary, built from NCI Thesaurus drug content and representing some 2-3% of all Cancer.gov use.
- FDA-hosted files and mail lists are used by tens of thousands of users for EVS supported FDA terminology standards, used on FDA internal servers for coding and validation of tens of thousands of data submissions each month.
- The SPL mail list alone has some 40,000 subscribers, and 9,466 different entities in more than 100 countries use this terminology to list their products.
- CDRH alone reports 35,000 safety report submissions a month based on NCI Thesaurus terminology.
- CDISC server registered downloads 2009-2011 included 2,973 users from 1,524 organizations for SDTM, and 866 users from 603 organizations for CDASH.
- Combined with downloads from NCI servers, total downloads of CDISC standard terminology files exceeded 15,000 from more than 90 countries, primarily for institutional use.
- NLM redistributes NCI Thesaurus to its 5,500 UMLS users, and gets 10,000,000 hits monthly on its 27,000 DailyMed SPL files all using EVS maintained SPL terminology.
Use of EVS Tools
- EVS software is available as open source for community code contributions and reuse.
- EVS has supported Mayo Clinic development of the LexEVS terminology servers, now being deployed at MD Anderson, Stanford, Emory, Ohio State University Medical Center, Georgetown University, Washington University, and National Cancer Research Institute (NCRI)/UK CancerGrid, as well as IBM and GE Healthcare.
- Several of these sites are also adopting EVS browser software.
- EVS has worked with Stanford and others on NCI Protégé and related tools.
- NPO is the only direct adopter of the NCI-customized versions of Protégé, but there has been extensive sharing of underlying Protégé and other development work.
- Other tools in development are also expected to have significant outside adoption.
The primary EVS website is an informational site with links to the other EVS tools and browsers and to multiple downloadable files. It has seen increasing use over time, now averaging over 6000 visitors and over 11,000 visits per month
Bibliography on EVS
- The EVS bibliography includes more than 400 scientific journal articles and related literature, covering
- Overviews and analyses of EVS.
- Programs and projects that discuss explicitly their use of EVS resources in support of cancer research and other scientific efforts.