RDAP "Ask Me Anything" Townhall webinar "What is different about Clinical Data?" Open Access Deposited

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Date Uploaded: 01/31/2020
Date Modified: 02/21/2020

This webinar was presented to the RDAP community on January 29, 2020 @ 1 pm EST. The goal of the webinar was to raise awareness of the special requirements of clinical data for data management.

Managing data has a number of common principles that get applied to each subject domain. As a result, it’s easy to start consideration of data with a disciplinary subject and data structure. But in the health sciences and medicine there is a key issue that has to be asked first: Is it clinical research data? Before delving into metadata standards, FAIR principles, or sharing, a health sciences data librarian often starts with the clinical/nonclinical distinction.

But what’s so special about clinical data? What do we even mean when we talk about clinical data? This session will introduce basic concepts in clinical data management, processes that are commonly used by researchers looking to do clinical data research. We will explore how a health sciences library can provide patron support on local infrastructure for accessing and using clinical data for research. We will also provide resources for further exploration by librarians and patrons.

Attendees will come away with:

(1) a better understanding of basic terminology and data workflows in clinical research data management;
(2) a sense of typical workflows that happen with the clinical research data lifecycle;
(3) an introduction to systems in clinical data collection and analysis, particularly REDCAP; and,
(4) at least one answer to the question of “What’s different about clinical?” When it comes to data.
Date: January 29, 2020 @ 1 pm EST


Nina Exner is the research data librarian at Virginia Commonwealth University, serving both the medical and core campuses. Before joining VCU in 2017, she was a Researcher and Grant Support Services librarian, supporting all disciplines. She received her Master’s in Library Science in 1997 from North Carolina Central University and her Ph.D. in information science from UNC-Chapel Hill in 2019. ORCID 0000-0002-8746-8364

Christy E Navarro joined UC Davis in August of 2019 as Health Library Informaticist at Blaisdell Medical Library. Prior to that she designed privacy programs for large health systems in California, helped implement ecosystems of research data sharing, developed best practice guidelines in data management, and served as the resource of choice for privacy, data de-identification, and research data questions. She brings 20 years of expertise in healthcare informatics, health information exchange, process improvement, program design, population health improvement, human subject research and patient & consumer privacy. Christy has a Master of Science in Health Informatics from UC Davis Health and a Bachelor of Science in Business with an emphasis in Management Information Systems from CSU Sacramento.

Lori D Sloane has been working at the University of New Mexico Health Sciences Center since 1990. For the first 23 years, she has been the IT support for researchers on campus. Lori brought REDCap to the University of New Mexico as one of the first 13 sites to pilot this software. She transitioned into a Data Manager position for the Health Sciences Library and Informatics Center seven years ago.

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Identifier: doi:10.7945/1wwj-1f92

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