Bridging the Research Data Divide: rethinking long-term value and access for historical and contemporary maternal, infant, and child research

Bridging the Research Data Divide

Rethinking Long-term Value and Access for Historical and Contemporary Maternal, Infant and Child Research

The Center for the History of Medicine and the University of Alberta Libraries (UAL) were awarded $367,602 in grant funding from the Council on Library and Information Resources (CLIR) for the proposal Bridging the Research Data Divide: Rethinking long-term value and access for historical and contemporary maternal, infant, and child research. Grant funding has enabled the Center and UAL to create rich metadata for discovery, access, citation, and long-term preservation of maternal, infant, child, and youth health (MCH) research data. The Cataloging Hidden Special Collections and Archives program is funded by The Andrew W. Mellon Foundation and administered by CLIR.

The project aims to help close a significant gap in current instructional and operational approaches to the long-term preservation of research data. Such approaches generally stop at the deposit of research data into a repository for short term retention. This type of approach does not take into consideration:1) the long-term historical value of research data; 2) interdisciplinary research; 3) how to describe research data for discoverability; 4) the need to identify and describe contextualizing manuscript collections that support the interpretation and reuse of data; 5) the need to describe data and records in advance of transferring the data to institutional repositories and special collections environments; and 6) how to make researchers aware of the existence of research data useful to their arenas of inquiry, even when collections contain protected information, such as HIPAA identifiers.

Project Dataverse Links:
Women and Children's Health Research Institute Pilot Study Catalogue (University of Alberta)
Center for the History of Medicine Dataverse (Harvard)

Primary Investigators are Emily R. Novak Gustainis (formerly the late Kathryn Hammond Baker) for the Harvard collection and Sharon Farnel (University of Alberta) and Kendall Roark (Purdue University) for the UAL/WCHRI collection.

Processing and metadata creation were performed by Amber LaFountain (project archivist, CHoM/Harvard University), Amanda Harrigan (Metadata Curation Specialist, UAL) and Saurabh Vashishtha (Data Curation Assistant, UAL).

Media Coverage:
Center for the History of Medicine News
University of Alberta News

Project Publications:
Harrigan A., Vashistha S., Farnel S., Roark, K. (2018). Participatory Prototype Design: Developing a Sustainable Metadata Curation Workflow for Maternal Child Health. IJDC, 13(1): 248-270. 

Project Presentations:
Farnel S., Vashistha S., Novak Gustainis, E. R., LaFountain, A., Harrigan A., Roark, K. Bridging the Research Data Divide: NADDI Presentation. NADDI 2016. (conference presentation)

Roark, K., Harrigan A., Vashistha S., Farnel S. (2016) Automating Metadata Creation: Enhanced Discovery and Description of Maternal Child Health Data. NADDI 2016. (conference poster)

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