Amy M. Pienta

Sharing Qualitative Research Data: Identifying and Addressing Ethical and Practical Barriers

Research Project Description

ICPSR will be a partner to WUSTL (lead) in the creation of a qualitative health data repository for NIH data. ICPSR?s activities include: (1) consultation to WUSTL about how to develop a data sharing culture among a scientific community, (2) technical assistance to scientists wishing to deposit qualitative data into the repository (review), (3) consultation to WUSTL about ICPSR standards for curating qualitative data, (4) repository services for the qualitative heath data identified and curated by WUSTL (including metadata review, data dissemination, preservation, user
support), (5), consultation to WUSTL about creating software to anonymize the qualitative health data based on ICPSR?s prior experience with developing the QUALANON web application for anonymizing qualitative data, and (6) assistance with outreach and training for data depositors and data users.

Funding: National Human Genome Research Institute (subcontract: 1 R01 HG 009351 01 A1)

Funding Period: 8/17/2017 to 6/30/2018

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