Guidance re data sharing and patient privacy

New guidance on data sharing will minimize risks to patient privacy, EurekAlert, January 28, 2010.

And: BMJ policy on data sharing, Trish Groves, BMJ 2010(Jan 28); 340: c564 (Editorial; only the first 150 words are publicly accessible).

See also: How to publish raw clinical data: guidelines from Trials and the BMJ, Matthew Cockerill, BioMed Central Blog, January 29, 2010.

About this article: Preparing raw clinical data for publication: guidance for journal editors, authors, and peer reviewers by Iain Hrynaszkiewicz, Melissa L Norton, Andrew J Vickers, Douglas G Altman, Trials 2010(Jan 29); 11(1): 9 [Epub ahead of print][Connotea bookmark][PubMedCitation].

This article has been co-published: BMJ 2010(Jan 28); 340: c181 [PubMed Citation]. Summary points:

Despite journal and funder policies requiring data sharing, there has been little practical guidance on how data should be shared

Confidentiality and anonymity are key considerations when publishing or sharing data relating to individuals, and this article provides practical advice on data sharing while minimising risks to patient privacy

Consent for publication of appropriately anonymised raw data should ideally be sought from participants in clinical research

Direct identifiers such as patients’ names should be removed from datasets; datasets that contain three or more indirect identifiers, such as age or sex, should be reviewed by an independent researcher or ethics committee before being submitted for publication

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