P.Mean: Data sharing (created 2012-11-21).

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I came across several interesting papers and editorials about data sharing.

Journal article: Brian D. Johnston. Living in the grey area: a case for data sharing in observational epidemiology Inj Prev. 2012. Excerpt: "In 2001, Injury Prevention journal published a paper by Macpherson and colleagues looking at the effect of a bicycle helmet ordinance on bicycle ridership in East York, Ontario, Canada.1 The questions addressed by the authors are important. While helmet laws may be enacted to promote helmet use and reduce bicycle-related injury, they could easily have unintended and undesirable consequences." [Accessed on November 20, 2012]. http://injuryprevention.bmj.com/content/early/2012/10/31/injuryprev-2012-040671.

Journal article: F. Godlee. Clinical trial data for all drugs in current use BMJ. 2012;345(oct29 2):e7304–e7304. Excerpt: "The drug industry does many good things. It produces medicines that can improve health and save lives. It creates jobs and stimulates economic growth. Sadly it does bad things too. Persistently and systematically over decades it has withheld and misreported data from clinical trials. As a result, a whole range of widely used drugs across all fields of medicine have been represented as safer and more effective than they are, endangering people's lives and wasting public money. Such wilful distortion is scientific misconduct. It is not something we can forgive because of the good things drug companies do. As Ben Goldacre says in the introduction to his new book Bad Pharma, "Drug companies around the world have produced some of the most amazing innovations of the past fifty years, saving lives on an epic scale. But that does not allow them to hide data, mislead doctors, and harm patients. [Accessed on November 20, 2012]. http://www.bmj.com/cgi/doi/10.1136/bmj.e7304.

Journal article: D. Payne. Tamiflu: the battle for secret drug data BMJ. 2012;345(oct29 2):e7303–e7303. Excerpt: "This week the BMJ, as part of its ongoing open data campaign, has launched a dedicated website aimed at persuading Roche to give doctors and patients access to the full data on oseltamivir (Tamiflu). The new site, www.bmj.com/tamiflu, displays emails and letters dating back to September 2009, when researcher Tom Jefferson first asked the company for the unpublished dataset used in a Roche supported analysis, published in 2003." [Accessed on November 20, 2012]. http://www.bmj.com/content/345/bmj.e7303.

Newspaper article: Katie Thomas. British Medical Journal to Require Detailed Clinical Trial Data The New York Times. 2012. Excerpt: " The British Medical Journal has announced that, beginning in January, it will no longer publish the results of clinical trials unless drug companies and researchers agree to provide detailed study data on request. The decision by the prominent journal is meant to prod pharmaceutical companies to open up the vast quantities of data they collect in researching new drugs, very little of which is ever made public. Critics say that when results are published in medical journals, they often present a drug in the best possible light and do not permit independent researchers to vet the data. " [Accessed on November 20, 2012]. http://www.nytimes.com/2012/11/01/business/british-medical-journal-to-require-detailed-clinical-trial-data.html.

Webpage: National Institutes of Health. NIH Data Sharing Information - Main Page Excerpt: "Data sharing is essential for expedited translation of research results into knowledge, products and procedures to improve human health. The Final NIH Statement on Sharing Research Data was published in the NIH Guide on February 26, 2003. This is an extension of NIH policy on sharing research resources, and reaffirms NIH support for the concept of data sharing. The new policy becomes effective with the October 1, 2003 receipt date for applications or proposals to NIH." [Accessed on October 15, 2012]. http://grants2.nih.gov/grants/policy/data_sharing/.

Journal article: Neil Pearce, Allan H Smith. Data sharing: not as simple as it seems Environmental Health: A Global Access Science Source. 2011;10(1):107. ABSTRACT: "In recent years there has been a major change on the part of funders, particularly in North America, so that data sharing is now considered to be the norm rather than the exception. We believe that data sharing is a good idea. However, we also believe that it is inappropriate to prescribe exactly when or how researchers should preserve and share data, since these issues are highly specific to each study, the nature of the data collected, who is requesting it, and what they intend to do with it. The level of ethical concern will vary according to the nature of the information, and the way in which it is collected - analyses of anonymised hospital admission records may carry a quite different ethical burden than analyses of potentially identifiable health information collected directly from the study participants. It is striking that most discussions about data sharing focus almost exclusively on issues of ownership (by the researchers or the funders) and efficiency (on the part of the funders). There is usually little discussion of the ethical issues involved in data sharing, and its implications for the study participants. Obtaining prior informed consent from the participants does not solve this problem, unless the informed consent process makes it completely clear what is being proposed, in which case most study participants would not agree. Thus, the undoubted benefits of data sharing doe not remove the obligations and responsibilities that the original investigators hold for the people they invited to participate in the study." [Accessed on December 26, 2011]. http://www.ehjournal.net/content/10/1/107/abstract.

Journal article: Iain Hrynaszkiewicz. A call for BMC Research Notes contributions promoting best practice in data standardization, sharing and publication BMC Research Notes. 2010;3(1):235. Abstract: "BMC Research Notes aims to ensure that data files underlying published articles are made available in standard, reusable formats, and the journal is calling for contributions from the scientific community to achieve this goal. Educational Data Notes included in this special series should describe a domain-specific data standard and provide an example data set with the article, or a link to data that are permanently hosted elsewhere. The contributions should also provide some evidence of the data standard's application and preparation guidance that could be used by others wishing to conduct similar experiments. The journal is also keen to receive contributions on broader aspects of scientific data sharing, archiving, and open data." [Accessed on September 3, 2010]. http://www.biomedcentral.com/content/3/1/235.

Webpage: Iain Hrynaszkiewicz. BMC Research Notes – adding value to your data Posted on the BioMEd Central Blog, Thursdy, September 2, 2010. Excerpt: "Support for scientific data sharing is gathering more and more support in 2010, so rather than "why share data?" the question now is 'how?'. Making data available in readily interpretable formats is vital to realising its value in driving new knowledge discovery, and BMC Research Notes today launches a new initiative aimed at promoting best practice in sharing and publishing data, with a focus on standardized, re-useable formats." [Accessed on September 3, 2010]. http://blogs.openaccesscentral.com/blogs/bmcblog/entry/bmc_research_notes_wants_your.

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