Abstract
Over the last decade, biomedical research and clinical practice have been transformed in many ways by the same technological advances that have made the world increasingly data driven. Journal and funder policies that promote data sharing also mean that not only do we have more data, but that more of it is available for researchers around the world to leverage in their pursuit of knowledge to advance human health. While the rise of biomedical big data has facilitated important advances, biomedical data science involves a unique set of challenges. Fortunately, librarians and information professionals are well suited to engage with researchers on many of these issues, making academic libraries ideally situated to serve as partners in advancing biomedical data science. Although the opportunities are many, this chapter specifically highlights five areas where librarians' skills make them valuable collaborators.
TopSupport For Data Management And Sharing
For many librarians, their first experience with supporting data management came in 2011, when the National Science Foundation (NSF) became one of the first federal funders in the United States to develop a broadly applicable requirement for a data management plan (DMP) to be submitted with grant proposals. In addition to requiring researchers to consider in advance how their data would be managed during and after the life of the project, the NSF’s policy set out the expectation that researchers should share “at no more than incremental cost and within a reasonable time, the primary data, samples, physical collections and other supporting materials created or gathered in the course of work under NSF grants” (National Science Foundation).
Key Terms in this Chapter
Common Data Elements (CDEs): An approach to standardizing data collection that pairs a precisely defined question with a set of specific allowable responses or a format for allowable responses.
Data Management and Sharing Plan (DMSP): A plan outlining how data will be managed and shared (or why data cannot be shared), which will be a requirement for NIH funding beginning in January 2023.
Community-Based Participatory Research (CBPR): An approach to developing research questions and programs that frames research participants not as passive subjects of study but equitable partners whose communities should benefit from their participation.
Canadian First Nations Principles of OCAP®: A framework for appropriate use of data about First Nations peoples, acknowledging rights of ownership, control, access, and possession of First Nations peoples about their own data.