ArticleProceedings of the National Academy of Sciences of the United States of America2023
Exchanging words: Engaging the challenges of sharing qualitative research data.
Article in Proceedings of the National Academy of Sciences of the United States of America, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Mixed Methods Studies Using Secondary Analysis in Nursing and Midwifery: A Methodological Review.Journal of advanced nursing · 2025Pooled it
- Ethical Considerations for Clinical Data Sharing in Craniofacial Research: Recommendations From a Multidisciplinary Working Group.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026Article
- Large language models for deductive qualitative content analysis in dementia-focused embedded pragmatic clinical trials: A comparative methodological study.Implementation science communications · 2026Article
- Developing a Data Note reporting guideline for qualitative health and social care research datasets (the DeNOTE study): A study protocol.Health psychology and behavioral medicine · 2025Article
- Talk of Family: How Institutional Overlap Shapes Family-Related Discourse Across Social Class.The Russell Sage Foundation journal of the social sciences : RSF · 2024Article
- The refined Pathways to Cures Research Roadmap for multiple sclerosis cures.Multiple sclerosis (Houndmills, Basingstoke, England) · 2024Article
- Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository.Journal of pain and symptom management · 2024Article
- Responsible Sharing of Qualitative Research Data: Insights From a Pioneering Project in the United States.International journal of qualitative methodsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
In January 2023, a new NIH policy on data sharing went into effect. The policy applies to both quantitative and qualitative research (QR) data such as data from interviews or focus groups. QR data are often sensitive and difficult to deidentify, and thus have rarely been shared in the United States. Over the past 5 y, our research team has engaged stakeholders on QR data sharing, developed software to support data deidentification, produced guidance, and collaborated with the ICPSR data repository to pilot the deposit of 30 QR datasets. In this perspective article, we share important lessons learned by addressing eight clusters of questions on issues such as where, when, and what to share; how to deidentify data and support high-quality secondary use; budgeting for data sharing; and the permissions needed to share data. We also offer a brief assessment of the state of preparedness of data repositories, QR journals, and QR textbooks to support data sharing. While QR data sharing could yield important benefits to the research community, we quickly need to develop enforceable standards, expertise, and resources to support responsible QR data sharing. Absent these resources, we risk violating participant confidentiality and wasting a significant amount of time and funding on data that are not useful for either secondary use or data transparency and verification.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.