Article

A Survey of Individuals’ Willingness to Share Real-World Data Post-Mortem with Researchers

2024-05-13

Abstract excerpt

<h4>Background</h4> Posthumous data use policy within the broader scope of navigating post-mortem data privacy is a procedurally complex landscape for those engaged in data collection and sharing, and data-driven health research. <h4>Objective</h4> To help address some of this complexity by exploring patterns in individuals’ willingness to donate data with health researchers after death and developing practical re...

Topics

Open a Topic to create a Post that cites this publication.

Identifiers and source

Literature Corpus work: 0f206c83-1c53-5e94-85c4-842035583e32
DOI: 10.1101/2024.05.13.24307263

Open publication

Related research

Semantic proximity does not establish scientific evidence.

Click a neighbor to travelStep 1 · 12 closest

A Survey of Individuals’ Willingness to Share Real-World Data Post-Mortem with ResearchersDOI 10.1101/2024.05.13.24307263Read

Physicians’ Attitudes towards Secondary Use of Clinical Data for Biomedical Research Purposes in Germany. Results of a Quantitative SurveySemantic proximity Read

How do we measure the costs, benefits, and harms of sharing data from biomedical studies? A protocol for a scoping reviewSemantic proximity Read

Public opinion on sharing data from UK health services for clinical and research purposes without explicit consentSemantic proximity Read

Willingness to donate genomic and other medical data: results from GermanySemantic proximity Read

Building public trust and confidence in secondary use of health data for healthcare improvement and research: a qualitative study pre-protocolSemantic proximity Read

Granular Data Selection and Altruistic Benefit Framing Increase EHR-Based Research Data Donation: A Mixed- Methods StudySemantic proximity Read

Common Practices for Sociodemographic Data Reporting in Digital Mental Health Intervention Research: A Scoping ReviewSemantic proximity Read

Consent to Recontact for Future Research Using Linked Primary Healthcare Data: Outcomes and General Practice Perceptions from the ATHENA COVID-19 StudySemantic proximity Read

“Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of IrelandSemantic proximity Read

Public attitudes toward sharing health data for artificial intelligence: Differences by data type and sector in the Health in Central Denmark cohortSemantic proximity Read

Re-contacting biobank participants: lessons from a pilot study within FinnGenSemantic proximity Read

Effects of Health Technology Use and Digital Health Engagement on Clinical Trial Participation: Findings from the Health Information National Trends SurveySemantic proximity Read