FAIR SCI Ahead: The Evolution of the Open Data Commons for Pre-Clinical Spinal Cord Injury Research

Abstract

Over the last 5 years, multiple stakeholders in the field of spinal cord injury (SCI) research have initiated efforts to promote publications standards and enable sharing of experimental data. In 2016, the National Institutes of Health/National Institute of Neurological Disorders and Stroke hosted representatives from the SCI community to streamline these efforts and discuss the future of data sharing in the field according to the FAIR (Findable, Accessible, Interoperable and Reusable) data stewardship principles. As a next step, a multi-stakeholder group hosted a 2017 symposium in Washington, DC entitled "FAIR SCI Ahead: the Evolution of the Open Data Commons for Spinal Cord Injury research." The goal of this meeting was to receive feedback from the community regarding infrastructure, policies, and organization of a community-governed Open Data Commons (ODC) for pre-clinical SCI research. Here, we summarize the policy outcomes of this meeting and report on progress implementing these policies in the form of a digital ecosystem: the Open Data Commons for Spinal Cord Injury (ODC-SCI.org). ODC-SCI enables data management, harmonization, and controlled sharing of data in a manner consistent with the well-established norms of scholarly publication. Specifically, ODC-SCI is organized around virtual "laboratories" with the ability to share data within each of three distinct data-sharing spaces: within the laboratory, across verified laboratories, or publicly under a creative commons license (CC-BY 4.0) with a digital object identifier that enables data citation. The ODC-SCI implements FAIR data sharing and enables pooled data-driven discovery while crediting the generators of valuable SCI data.

Keywords: FAIR data; ODC-SCI; community-based repository; data sharing; spinal cord injury.

FiG. 1.

Responses to the question “what is ‘data’ that should be shared?” (n = 26). Color image is available online.

FIG. 2.

Responses to the level of license considered appropriate for various types of data (n = 26; *four respondents chose more than one answer, only the most conservative/restricted was counted). CC, Creative Commons. Color image is available online.

FIG. 3.

Outreach suggestions from meeting participants. ODC, Open Data Commons; SCI, spinal cord injury. Color image is available online.

FIG. 4.

Data-sharing spaces within the ODC-SCI. Based on community input from the 2016 (Bethesda, MD) and 2017 (Washington, DC) workshops, we have built the ODC-SCI architecture around distinct data-sharing spaces using a restaurant metaphor (from delivery, storage, processing in the kitchen and serving it in a public space, i.e., the dining room). The spaces range from the most closed, private, and secure space (left) to the most open and public space (right). The “lab” is the organizational unit of the ODC-SCI, and within the lab private space, the PI has total control over data-sharing permissions. Once data are uploaded and curated within the lab, the PI can submit the data to the semiprivate space of the ODC-SCI that is shared among verified laboratories. This will allow pooled research and data curation. Once data have been fully vetted through the processes described in this proposal, data can be shared publicly, will be given a permanent digital object identifier (DOI) and released using a creative commons BY (CC-BY) license, the same publication license used by open-access publishers. This will make data searchable using web search engines and will allow data citation and linkage of source data to their associated published articles. CC, Creative Commons; ODC-SCI, Open Data Commons/spinal cord injury; PI, principal investigator. Color image is available online.