When a dataset is too sensitive to share in its entirety, it is necessary to consider: "how can a version that is safe to share be created?". The process of doing so involves de-identification or anonymisation to remove all data that can be used to identify individual participants in a research project, thereby protecting their privacy. This may require hiring a professional statistician, which can be written into a grant.
The following are characteristics identified by the BioMedical Informatics Coordinating Committee (BMIC) as being desirable characteristics of data repositories:
Additional considerations for repositories involving human data:
Source: Huerta MF. Strategic Approaches to Data Science & Open Science: Research Data Management. Presented at: Research Data Management Symposium; 2019 Dec 5; New York, NY.
These repositories are selected from the much longer list available via NIH.
These generalist repositories are affiliated with NIH, which suggests depositing in a generalist repository if a domain specific repository cannot be found. List from NIH.
There are two options for Northwell employees who wish to obtain EHR data for research purposes.
There are several considerations you may need to account for when choosing a repository for your data.
For questions or comments, email us at lena.g.bohman@hofstra.edu.
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