FOA Title: 
Request for Information (RFI): Making Data Usable--A Framework for Community-Based Data and Metadata Standards Efforts for NIH-relevant Research
Grant Type: 
Primary IC: 
Release Date: 
Nov 06 2014
Expiration Date: 
AC Source: 
Request Information RFI): Making Data Usable--A Framework Community-Based Data Metadata Standards Efforts NIH-relevant Research Notice Number: NOT-ES-15-002 Key Dates Release Date: November 5, 2014 Response Date: December 5, 2014 Related Announcements None Issued National Institute Environmental Health Sciences NIEHS) National Cancer Institute NCI) National Institute Aging NIA) National Institute Allergy Infectious Diseases NIAID) National Institute Biomedical Imaging Bioengineering NIBIB) Eunice Kennedy Shriver National Institute Child Health Human Development NICHD) National Institute Deafness Other Communication Disorders NIDCD) National Institute Mental Health NIMH) National Institute Neurological Disorders Stroke NINDS) National Institute Nursing Research NINR) National Library Medicine NLM) National Center Complementary Alternative Medicine NCCAM) National Center Advancing Translational Sciences NCATS) Office Strategic Coordination Common Fund) Purpose mission the NIH Big Data Knowledge BD2K) initiative to enable biomedical scientists capitalize fully the Big Data being generated those research communities. BD2K aims develop new approaches, standards, methods, tools, software, competencies will enhance use biomedical Big Data1 supporting research, implementation, training data science other relevant fields. addressing goal, important aspect to biomedical research data resources maximally shareable reusable. this reason, BD2K formulating approaches encourage development facilitate use data-related including metadata) standards broadly across biomedical research community is, therefore, interested the issues involved developing community-based standards. Request Information RFI) solicits comments ideas related how community standards activities initiated, developed, disseminated, sustained any role NIH might play helping catalyze such efforts. Background Community-based data metadata standards been generated many levels across biomedical research community, small research consortia multinational enterprises facilitate comparison integration data different sources, accelerate collaboration, to enable broad sharing reuse data. Examples include grass-roots efforts such the Gene Ontology GO) more heavily organized efforts such Logical Observation Identifiers Names Codes LOINC), the Digital Imaging Communication Medicine DICOM) standard radiological image transfer. Any such effort must only address specific but, also, set common issues, latter including not necessarily limited to) definition mission scope, governance operational procedures, such processes creating, publishing maintaining standards make useful widely accepted. Different groups employed range strategies variable degrees complexity, formality documentation carry their activities support community-based standards development. opportunities value secondary uses data increasing, i.e., scientists are those originally generated data increasingly able extract new knowledge them. Researchers combine existing data sets across studies integrate different complex data types address questions unanticipated the original investigator(s). ability do is highly affected the extent quality the annotation the original data sets. evidence suggests without appropriate data metadata standards, meaningful data sharing the promise new knowledge created those data, not possible2 Thus, widespread of high quality data metadata standards, part a larger effort promote data access reuse, essential NIH to fully capitalize the explosion biomedical Big Data advancing fundamental knowledge complex human biology its translation human health. NIH recognizes are already numerous standards groups, both public private, across scientific disciplines. of have developed proven processes, infrastructure, community support methodologies. NIH interested exploring the BD2K initiative contribute the improvement policies, governance, administrative procedures, funding support community-based standards CBS) efforts develop and/or extend data and/or metadata standards, how activities relate other ongoing nascent biomedical research activities. Within context, lsquo;community’ encompasses broad range stakeholders may engaged the process data standards development use, including technical developers, librarians, science domain experts, researchers, information scientists, vendors, funders, publishers, other end users. Information Requested stakeholders an interest CBS invited provide information. response include, is limited to, membership within industry, government, academia. you choose, can categorize area expertise including that apply: Standards Efforts Data Management Clinical Science Basic Science Research Information Science e.g., biomedical informatics) Publishing Library Science Funding End-user NIH seeking information include, not limited to, following areas: Effective approaches, processes, activities could advance community-based standards landscape e.g., creating collaborative workspace an advising structure toward standards development, extension, adoption). Gaps community-based data standards relevance biomedical research, including real use-cases e.g., emerging fields technologies, research domains multiple existing data standards could benefit additional work, integration and/or reconciliation). Lessons learned existing CBS efforts, particularly examples field-tested processes infrastructure known examples failures CBS efforts. Common challenges CBS development e.g., methods community engagement building interoperability other related standards). Considerations evaluating progress milestones assess data standards development utility. Effective approaches addressing need sustain useful standards, to update existing standards a field develops. Submitting Response responses must submitted December 5, 2014. Please include Notice number NOT-ES-15-002 the subject line. Response this RFI voluntary. Responders free address any all the categories listed above. submitted information be reviewed the NIH staff. Submitted information be considered confidential. Responses this RFI voluntary. Please not include any proprietary, classified, confidential, sensitive information your response. NIH use information submitted response this RFI its discretion will provide comments any responder's submission. collected information be reviewed NIH staff, appear reports, may shared publicly an NIH website. Government reserves right use any non-proprietary technical information summaries the state the science, any resultant solicitation(s). NIH use information gathered this RFI inform development future funding opportunity announcements. RFI for information planning purposes only should be construed a solicitation as obligation the part the Federal Government, National Institutes Health NIH), individual NIH Institutes Centers. basis claims against U.S. Government shall arise a result a response this request information from Government’s of such information. 1 term Big Data' meant capture opportunities challenges facing biomedical researchers accessing, managing, analyzing, integrating datasets diverse data types e.g., imaging, phenotypic, molecular including various '–omics'), exposure, health, behavioral, the other types biological biomedical behavioral data] are increasingly larger, diverse, more complex, that exceed abilities currently used approaches manage analyze effectively. Big Data emanate three sources: 1) small number groups produce very large amounts data, usually part projects specifically funded produce important resources use the entire research community; 2) individual investigators produce large datasets, often empowered the of readily available new technologies; 3) even greater number sources each produce small datasets e.g. research data clinical data electronic health records) whose value be amplified aggregating integrating with data. 2 the report the Data Informatics Working Group the Advisory Committee the Director, NIH ACD), available at: Inquiries Please direct inquiries to: Cindy P. Lawler, Ph.D. National Institute Environmental Health Sciences NIEHS) Telephone: 919-316-4671 Email: