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Qualitative Analysis03:46

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Exchanging words: Engaging the challenges of sharing qualitative research data.

James M DuBois1, Jessica Mozersky1, Meredith Parsons1

  • 1Bioethics Research Center, Department of Medicine, Washington University School of Medicine, St. Louis, MO 63110.

Proceedings of the National Academy of Sciences of the United States of America
|October 13, 2023
PubMed
Summary
This summary is machine-generated.

New NIH data sharing policies impact qualitative research (QR). Lessons learned address challenges in sharing sensitive QR data, emphasizing the need for standards and resources to ensure responsible data sharing and prevent confidentiality risks.

Keywords:
FAIR principlesdata de-identificationdata sharingqualitative researchresearch compliance

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Area of Science:

  • Social Sciences
  • Health Sciences
  • Data Management

Background:

  • A new NIH policy effective January 2023 mandates data sharing for all research, including sensitive qualitative research (QR) data.
  • Qualitative research data, such as interviews and focus groups, are often difficult to deidentify and have historically been under-shared in the US.

Purpose of the Study:

  • To share lessons learned from engaging stakeholders and piloting the deposit of 30 qualitative research datasets.
  • To address key questions regarding the practicalities of qualitative research data sharing, including deidentification, secondary use, budgeting, and permissions.

Main Methods:

  • Stakeholder engagement over five years.
  • Development of data deidentification software.
  • Collaboration with the ICPSR data repository for a pilot data deposit.
  • Analysis of eight clusters of questions related to data sharing.

Main Results:

  • Identified critical issues in sharing qualitative research data.
  • Assessed the preparedness of data repositories, journals, and textbooks for qualitative data sharing.
  • Highlighted the need for standards, expertise, and resources for responsible data sharing.

Conclusions:

  • Qualitative research data sharing offers significant benefits but requires immediate development of enforceable standards and resources.
  • Failure to establish these resources risks participant confidentiality and inefficient use of research funding and time.
  • Proactive development of infrastructure is crucial for enabling secure and effective secondary use of qualitative data.