Abstract

 This paper describes the findings from a participatory prototype design project, where the authors worked with maternal and child health (MCH) researchers and stakeholders to develop a MCH metadata profile and sustainable curation workflow. This work led to the development of three prototypes: 1) a study catalogue hosted in Dataverse, 2) a metadata and research records repository hosted in REDCap and 3) a metadata harvesting tool/dashboard hosted within the Shiny RStudio environment. We present a brief overview of the methods used to develop the metadata profile, curation workflow and prototypes. Researchers and other stakeholders were participant-collaborators throughout the project. The participatory process involved a number of steps, including but not limited to: initial project design and grant writing; scoping and mapping existing practices, workflows and relevant metadata standards; creating the metadata profile; developing semi-automated and manual techniques to harvest and transform metadata; and end project sustainability/future planning. In this paper, we discuss the design process and project outcomes, limitations and benefits of the approach, and implications for researcher-oriented metadata and data curation initiatives.
Highlights
In recent years, there has been a call for more participatory and community driven approaches to cataloguing and metadata schema creation within the context of digital archives and libraries (Bowler et al, 2011; Farnel et al, 2017) and data repositories (Yarney and Baker, 2013; Michener et al, 2012)
The Council on Library and Information Resources (CLIR) funded ‘Bridging the Research Data Divide’ (BRDD) project is informed by this call as well as by a desire to bridge the gap between archival and data repository approaches to scientific data curation
This paper focuses on the processes that University of Alberta Libraries (UAL) developed to describe a selection of maternal and child health (MCH) research studies conducted by members of the Women and Children’s Health Research Institute (WCHRI)2
Summary
There has been a call for more participatory and community driven approaches to cataloguing and metadata schema creation within the context of digital archives and libraries (Bowler et al, 2011; Farnel et al, 2017) and data repositories (Yarney and Baker, 2013; Michener et al, 2012). Dataverse is “an open source web application to share, preserve, cite, explore, and analyze research data.” Dataverse metadata is based on the DDI schema, which is designed for and most suited to social science data To assess whether these metadata elements were sufficient and what other fields might be required for the discovery, use and preservation of MCH research, several other schemas, standards, repositories and vocabularies, including those specific to data and clinical and health research, were consulted. We were able to use the conceptual and semantic mappings done earlier in the project to import common elements from the ClinicalTrials.gov registry to our Dataverse-based schema in REDCap using APIs. we used a package called ‘RISmed’ to access the Pubmed API for relevant publication information. They [collaborator/PI] didn’t want it out there. [...] I wanted to see the value of something that I contributed to the creation of and didn’t see it realized in that last moment because of concerns that this is proprietary, this is mine.”
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