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

Salimah H. Meghani, Department of Biobehavioral Health Sciences NewCourtland Center for Transitions and Health; Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia.
Kim Mooney-Doyle, Department of Family & Community Health, School of Nursing, University of Maryland.
Amber Barnato, The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine; Section of Palliative Care, Department of Medicine, Dartmouth Health.
Kathryn Colborn, Department of Medicine, School of Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO.
Riley Gillette, Adult and Child Center for Outcomes Research and Delivery Science, University of Colorado Anschutz Medical Campus, Aurora, CO.
Krista L. Harrison, Division of Geriatrics, Department of Medicine; Philip R. Lee Institute for Health Policy Studies; University of California, San Francisco.
Pamela S. Hinds, Interim Director, Center for Translational Research; Director, Department of Nursing Science, Professional Practice & Quality; Research Integrity Officer; William and Joanne Conway Chair in Nursing Research; Children's National Hospital; Professor of Pediatrics, School of Medicine and Health Sciences, George Washington University, Washington, D.C.
Dessi Kirilova, Qualitative Data Repository, Syracuse University.
Kathleen Knafl, FAAN. School of Nursing, University of North Carolina at Chapel Hill.
Dena Schulman-Green, New York University Rory Meyers College of Nursing, New York, NY.
Kathryn I. Pollak, Department of Population Health Sciences, Duke University School of Medicine; Cancer Prevention and Control, Duke Cancer Institute.
Christine S. Ritchie, Harvard Medical School, Mongan Institute Center for Aging and Serious Illness and the Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston MA.
Jean S. Kutner, Department of Medicine, University of Colorado School of Medicine, Aurora, CO.
Sebastian Karcher, Qualitative Data Repository and Department of Political Science, Syracuse University. Electronic address: skarcher@syr.edu.

Document Type

Journal Article

Publication Date

5-31-2024

Journal

Journal of pain and symptom management

DOI

10.1016/j.jpainsymman.2024.05.027

Keywords

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

Abstract

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.

Department

Pediatrics

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