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Related Experiment Video

Updated: Jun 24, 2025

The Participant-Reported Implementation Update and Score PRIUS: A Novel Method for Capturing Implementation-Related Data Over Time
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Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository.

Salimah H Meghani1, Kim Mooney-Doyle2, Amber Barnato3

  • 1Department of Biobehavioral Health Sciences NewCourtland Center for Transitions and Health (S.H.M), Leonard Davis Institute of Health Economics; University of Pennsylvania, Philadelphia, PA.

Journal of Pain and Symptom Management
|June 2, 2024
PubMed
Summary

The Palliative Care Research Cooperative Group (PCRC) established the first U.S. repository for serious illness and palliative care qualitative data. This initiative supports the growing expectation for open science and data sharing in health research.

Keywords:
Qualitative datadata repositorydata sharingopen sciencepalliative care

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Area of Science:

  • Health Research
  • Open Science
  • Qualitative Data Management

Background:

  • Data sharing is a growing expectation in health research, driven by open science principles.
  • The 2023 National Institutes of Health Data Management and Sharing Policy mandates data sharing for all studies, including qualitative research.
  • The Palliative Care Research Cooperative Group (PCRC) recognized the need for a dedicated qualitative data repository.

Purpose of the Study:

  • To establish the first qualitative data repository for serious illness and palliative care in the U.S.
  • To describe the development process, outreach, and initial data deposition for the PCRC-QDR.
  • To advance best practices in qualitative data sharing within palliative care research.

Main Methods:

  • Partnered with the Qualitative Data Repository (QDR) to create the PCRC-QDR.
  • Co-designed the repository with tailored guidelines for data deposition and sharing based on research context.
  • Developed uniform documentation expectations and implemented access controls for sensitive data.
  • Leveraged the existing PCRC community for recruiting and guiding early data depositors.

Main Results:

  • Successfully established the PCRC-QDR, the first U.S. repository of its kind.
  • Onboarded the first ten projects to share qualitative data in the repository.
  • Gained insights into the practicalities of co-designing guidelines and managing sensitive qualitative data.

Conclusions:

  • The PCRC-QDR successfully addresses the need for qualitative data sharing in palliative care research.
  • The established processes and guidelines provide a model for other research communities.
  • This work contributes to the broader advancement of best practices in open science and qualitative data management.