ArticleApplied clinical informatics2024
What Do We Mean by Sharing of Patient Data? DaSH: A Data Sharing Hierarchy of Privacy and Ethical Challenges.
Article in Applied clinical informatics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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.
- 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
- Unlocking multi-institutional insights into disease progression with PEAL as a lossless, one-shot federated learning solution.NPJ digital medicine · 2026Article
- Reward-Guided Generation Improves the Scientific Utility of Synthetic Biomedical Data.medRxiv : the preprint server for health sciences · 2026Article
- Skin disease diagnostics through federated transfer learning on heterogeneous data.Scientific reports · 2026Article
- AI-driven virtual cell models in preclinical research: technical pathways, validation mechanisms, and clinical translation potential.NPJ digital medicine · 2025Review
- What Clinicians Should Tell Patients About Wearable Devices and Data Privacy: A Narrative Review.Cureus · 2025Review
- Ethical Dimensions of Clinical Data Sharing by U.S. Health Care Organizations for Purposes beyond Direct Patient Care: Interviews with Health Care Leaders.Applied clinical informatics · 2025Article
- Challenges and opportunities in perinatal public health: the utility of perinatal health inequality dashboards in addressing disparities in maternal and neonatal outcomes.BMC pregnancy and childbirth · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundClinical data sharing is common and necessary for patient care, research, public health, and innovation. However, the term "data sharing" is often ambiguous in its many facets and complexities-each of which involves ethical, legal, and social issues. To our knowledge, there is no extant hierarchy of data sharing that assesses these issues.
objectiveThis study aimed to develop a hierarchy explicating the risks and ethical complexities of data sharing with a particular focus on patient data privacy.
methodsWe surveyed the available peer-reviewed and gray literature and with our combined extensive experience in bioethics and medical informatics, created this hierarchy.
resultsWe present six ways on how data are shared and provide a tiered Data Sharing Hierarchy (DaSH) of risks, showing increasing threats to patients' privacy, clinicians, and organizations as one progresses up the hierarchy from data sharing for direct patient care, public health and safety, scientific research, commercial purposes, complex combinations of the preceding efforts, and among networked third parties. We offer recommendations to enhance the benefits of data sharing while mitigating risks and protecting patients' interests by improving consenting; developing better policies and procedures; clarifying, simplifying, and updating regulations to include all health-related data regardless of source; expanding the scope of bioethics for information technology; and increasing ongoing monitoring and research.
conclusionData sharing, while essential for patient care, is increasingly complex, opaque, and perhaps perilous for patients, clinicians, and health care institutions. Risks increase with advances in technology and with more encompassing patient data from wearables and artificial intelligence database mining. Data sharing places responsibilities on all parties: patients, clinicians, researchers, educators, risk managers, attorneys, informaticists, bioethicists, institutions, and policymakers.
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Identifiers
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.