Today we have a guest posting from F1000’s Iain Hrynaszkiewicz covering the topic of medical data sharing
One of the world’s most influential medical journals recently highlighted data sharing as an important issue to be addressed if we are to improve the quality of reporting of biomedical research. However, the journal may have overlooked strong and far-reaching support for data sharing in some publishing and research communities.
In an editorial published last month in JAMA, former Editor of the journal Drummond Rennie and its current Executive Managing Editor Annette Flanagin reported on the Seventh International Congress on Peer Review and Biomedical Publication in September 2013. Although criticized in 2009 for showing slow progress in the research topics it covered, the Peer Review Congress in 2013 covered a number of issues of significant current and future importance – in particular, disclosure of the results of clinical trials, and data sharing and publication. And it should be applauded for doing so.
An increase in publicly available data will yield many benefits for research and can empower groups outside of traditional academic circles, such as Hacking Health, to tackle important problems affecting global health. Access to clinical trial data again received wide attention this month as evidence of hidden Tamiflu data emerged, which experts at the Cochrane Collaboration say has led to millions wasted on a treatment with only marginal benefits (although concerns about oseltamivir’s efficacy and lack of data accessibility have been known for several years, including in BioMed Central’s Trials journal).
On research into data sharing policies and behaviours presented at the Congress, Rennie and Flanagin write: “There is renewed interest in the crucial but emotional, perhaps threatening, and technically challenging issue of sharing of data…Although these developments are encouraging, journals have not yet determined if and how they can assist in data sharing, let alone conduct review of the massive databases needed to assess such studies.”
I share the concern expressed by Rennie and Flanagin in their editorial that the issue of sharing of data is technically challenging and emotionally sensitive, but disagree that journals have not yet determined if and how they can assist in data sharing. Furthermore, much work has been done to review and catalogue the large numbers of databases and repositories that can work with journals to support data sharing. Several clinical medicine journals including Trials and BMJ have, several years ago, expressed strong support for data sharing and subsequently developed polices and guidelines to encourage and facilitate data sharing. There are a growing number of data journals and journals publishing data papers, and some that have employed curators to incentivize and assist authors in data sharing and publication, including GigaScience, F1000Research and Scientific Data. PLOS, publisher of the world’s largest journal, as of March 2014 require data supporting publication to be publicly available. F1000Research and GigaScience have always required data supporting publications to be publicly available as a condition of publication – unless patient privacy would be compromised.
Journals can also incentivize data sharing by permitting and encouraging citation of datasets in reference lists – as is done by BioMed Central, publisher of GigaScience, F1000Research and many other journals which have endorsed the Joint Declaration of Data Citation Principles. While to some, data citation and linking, and journal policies requiring full access to data may remain contentious issues, it seems clear that numerous journals and publishers have firmly established their role in data sharing and are working to address these issues.
Patient privacy is a fundamental consideration in sharing medical research data but need not always prohibit responsible sharing. Clinically sensitive genetics data has been well handled by the EGA and dbGaP, with the controlled access part of the Sequence Read Archive having amassed more than one petabyte of data. And the recently launched Global Alliance for Genomics and Health are aiming to further catalyze the responsible sharing of genomic and clinical data.
While there are a great many data repositories –of which a smaller proportion may be well placed to handle clinical data – there are a number of well-curated resources such as Databib, biosharing and res3data that have systematically collected this information for researchers. Also, another project – presented at the 2013 Peer Review Congress and previously announced on the BioMed Central blog – is aiming to catalogue a subset of these repositories for clinical data.
Acknowledgement: This blog is an adapted version of a Letter to the Editor submitted to JAMA in response to Drummond and Flanagin’s editorial by Scott Edmunds and Iain Hrynaszkiewicz.
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