Using Metadata to Promote Transparency in Health Research: Creating the COVID Measures Archive at ICPSR
Creators: name: Chenoweth, Megan
name: Kubale, John
Publisher: name: Zenodo
Year: 2024

description: Data sharing is a key strategy for fostering transparency, reproducibility, and trust in scientific research. In the United States, major funding agencies such as the National Institutes of Health (NIH) require grant recipients to share their research data as a condition of funding. ICPSR, a consortium for curating and sharing research data at the University of Michigan, houses several dedicated NIH-funded data repositories to which grantees are required to submit their research data upon publication of new findings and/or completion of the research project. However, many NIH-funded projects face obstacles to data sharing, either to protect research participants’ privacy, safeguard proprietary data, or remain compliant with data use agreements.

At the same time, researchers who cannot openly share data still benefit from openness and transparency into one another’s work, and to making their own research more transparent where possible. To build a body of knowledge about a given topic, researchers must be able to compare findings and results across studies on that topic. Consistency of measurement across studies is a critical first step toward this goal. This is especially true for relatively novel research topics, such as the COVID-19 pandemic, where scientists must rapidly find ways to model and measure emerging concepts. Further, conflicting findings resulting from inconsistent measurement may reduce trust in institutions when it’s needed most.

The Social, Behavioral, and Economic COVID Coordinating Center at ICPSR (SBE CCC) has launched a new archive aimed at addressing these challenges within the domain of social, behavioral, and economic (SBE) research into the COVID-19 pandemic. Funded by NIH, the coordinating center fosters communication and collaboration between a team of NIH funded researchers, the social science research community, and the public. In September 2023, SBE CCC launched the COVID measures archive with the dual goals of a) offering researchers the ability to compare measures across SBE studies of COVID while b) protecting contributors’ needs for privacy and confidentiality in health research.

Unlike most repositories at ICPSR, the COVID measures archive holds primarily variable-level metadata: a list of variables, question text, possible values, a description of the data source and/or construction method, and information on where and how to obtain the source data. At the same time, the COVID measures archive harnesses the technical capabilities and features that ICPSR employs for making data findable and accessible: study and variable descriptions encoded using the Data Documentation Initiative (DDI) standard; digital object identifiers (DOIs) for uniquely identifying each study; options for browsing variables within a study; and the ability to search and compare at the variable level across studies within and across archives.

This lightning talk will illustrate the features of the COVID measures archive, show how it can be used to foster transparency and consistency across SBE COVID studies, and highlight some of the data and metadata that can be found there so far. It will also discuss plans for enhancing and adding new studies to the repository in the future.