Many institutions produce research data with legal protections, whether
through the Health Insurance Portability and Accountability Act (HIPAA),
Family Educational Rights and Privacy Act (FERPA), the Common Rule, or
intellectual property protections associated with trade secrets. There are
well-established mechanisms for sharing data in a controlled way, such as
Data Use Agreements and via systems like health information exchanges yet
few institutions use existing platforms to enhance visibility and access to
research datasets. We see a valuable opportunity for librarians to improve
the visibility of protected data, improve documentation and support for the
researchers who use these mechanisms, and develop strong relationships with
administrative units in this area.
This presentation (briefly) describes initial work to pilot a data catalog
at Indiana University Purdue University Indianapolis (IUPUI) to enhance the
discovery and sharing of protected data generated on campus for reuse in
appropriate and controlled ways. This work involves the development of a
use case template, modifications required for the existing data repository,
and the workflow for review and approval of the requested use. This pilot
project has relied heavily on partnerships with our institutions' School of
Medicine and School of Public Health as well as the University HIPAA
Privacy Officer and HIPAA Security Officer.