Researchers have removed the previously openly available anonymised patient data of the clinical trial FINE from their publication in PLOS One. The correction, issued on May 18th 2016 states:
“S1 Dataset was published in error. The error was corrected in the XML and PDF versions of this article on May 9, 2016. Please download this article again to view the correct version”.
The now removed S1 dataset was previously described by the authors around Alison Wearden, professor of Health Psychology at the University of Manchester, in their Data Availability statement:
“The authors have prepared a dataset that fulfills requirements in terms of anonymity and confidentiality of trial participants, and which contains only those variables which are relevant to the present study. Data are available as Supplementary Information”.
FINE was a “randomised controlled trial of a nurse-led self-help treatment, versus supportive listening, versus treatment as usual for patients in primary care with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)”, performed at the University of Manchester. It was funded by the British Medical Research Council (MRC) and the UK Department of Health.
These new restrictive developments are very important. FINE is considered as a sister CFS/ME therapy trial of the PACE trial (on which I previously reported), where the sharing of anonymised patient data to non-collaborators was repeatedly denied by the King’s College London and Queen Mary University London, with the consequence that now the courts are expected to decide upon this issue of clinical data sharing. A judge has already decreed that certain documents associated with PACE trial are to be released (information and list with links are available from the website by the lawyer and CFS/ME activist Valerie Eliot Smith). Continue reading “PLOS Correction removes (then reinstates) previously available anonymised patient clinical trial data”
Open Science is these days largely about mandatory publishing in Open Access (OA), regardless of the costs to poorer scientists or the universities which already struggle to pay horrendous subscription fees. Meanwhile, publishers openly declare that the so-called Gold (author-pays) OA will be much more expensive than even current subscription rates, yet wealthy western institutions like the Dutch university network VSNU or the German Max Planck Society do not seem troubled by this at all. They seriously expect the publishing oligopoly of Elsevier, SpringerNature and Wiley to lower the costs for Gold OA later on, out of the goodness of their hearts (as this winter’s invitation-only Berlin12 OA conference suggests).
At the last major Open Science conference in Amsterdam on April 4-5 (EU2016NL) the EU Commissioner for Research, Science and Innovation, Carlos Moedas and EC Director-General for Research and Innovation, Robert-Jan Smits, announced to achieve the flip to Gold OA by 2020. Open Data, on the other hand, is just a buzzword to them.
Below, I will argue that Open Data is much more important than OA, which in turn will be much cheaper and easier to achieve once unconditional sharing of research data is in place. Continue reading “False priorities at EU2016NL: Mandate Open Data instead of Gold Open Access!”
Two seemingly opposing medical editorials on the subject of data sharing have recently been published. One, by the International Committee of Medical Journal Editors (ICMJE) appeared in all of its member journals, a non-paywalled version can be freely read at PLOS Medicine. Its lead author is ICMJE Secretary Darren Taichman, professor of medicine at the University of Pennsylvania. The message goes:
“(ICMJE) believes that there is an ethical obligation to responsibly share data generated by interventional clinical trials because participants have put themselves at risk […]
As a condition of consideration for publication of a clinical trial report in our member journals, the ICMJE proposes to require authors to share with others the deidentified individual-patient data (IPD) underlying the results presented in the article (including tables, figures, and appendices or supplementary material) no later than 6 months after publication”
Continue reading “Research “parasitism” and authorship rights”