Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository

Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository

Meghani SH; Mooney-Doyle K; Barnato A; Colborn K; Gillette R; Harrison KrL; Hinds PS; Kirilova D; Knafl K; Schulman-Green D; Pollak KI; Ritchie CS; Kutner JS; Karcher S

Journal of Pain and Symptom Management

2024

palliative care; Palliative Care; data repository; data sharing; open science; qualitative data

Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that 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 establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.

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July List 2024