Sayeed Choudhury
Associate Dean for Research Data Management
Johns Hopkins University
Mara Blake
Manager of Data Services
Johns Hopkins University
The provost at Johns Hopkins University (JHU) asked the Libraries to update the existing institutional JHU Data Archive to host, share, and preserve health sciences data. Consequently, the Libraries have worked with faculty and the Institutional Review Board (IRB) from the School of Medicine, the JHU Data Trust, which sets policies and processes for use of clinical data, the School of Medicine and University Legal Counsel, and the Chief Information Security Officer. This process has illuminated numerous issues that are relevant to HIPAA, data use and sharing agreements, data policies, data transfer and curation workflows, and user interface development. There are important observations to share with the community in terms of de-identification or anonymization of data, scanning tools for personally identifiable information or personal health information, and workflows for both static and dynamic data from a variety of technology platforms (including high-performance computing facilities). The JHU Libraries have also considered how to integrate our updated Data Archive with the Public Access Submission System (PASS) such that researchers could submit cited data at the same time as they deposit articles into PubMedCentral and institutional repositories.