Processes and Lessons Learned in Establishing the Palliative Care Research Cooperative’s Qualitative Data Repository in Serious Illness and Palliative Care

Abstract

Data sharing is increasingly an expectation in health research since implementation of the National Institutes of Health Data Management and Sharing Policy. Qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to develop guidelines for depositing and sharing qualitative data, creating the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, the PCRC-QDR, and to share the data contained in the repository, as well as lessons learned. Specifically, we discuss options for data sharing, key components of relevant documentation, and the use of suitable access controls for sensitive data. This work advances the establishment of best practices in qualitative data sharing.