Data sharing policies: Do the Dutch do it better?

sharingdata

As noted in my recent post at PLOS Mind the Brain, time is running out for Queen Mary University London and the PACE investigators to to appeal an important decision:

The UK’s Information Commissioner’s Office (ICO) ordered Queen Mary University of London (QMUL) on October 27, 2015 to release anonymized from the PACE chronic fatigue syndrome trial data to an unnamed complainant. QMUL has 28 days to appeal.

As of this writing, the University and the investigator group have less than a week to appeal. Hopefully by the time you’re reading this blog post, we will know that there is no appeal and the decision stands.

The whole matter puts to an important test just what teeth there are two increasing unanimity of commitments by governments and funding and regulatory agencies to the idea that investigators must share data.

But as I detail in my blog post at Mind the Brain, my personal experience is that investigators can flagrantly withhold their data and garner support from institutions for doing so.

 

Below is a guest blog post by Dutch research biologist Klaas van Dijk.

klaas

It came about  after Klaas made aa detailed comment on an excellent blog post from Dorothy Bishop, Who’s afraid of Open Data. I asked Klaas if I could share his comment as a guest blog post and he kindly agreed.

 

Dutch flagHe describes a situation in the Netherlands with data sharing policies are explicit and taken seriously. That’s quite laudable. However, it explains his frustrations dealing with Oxford University in the UK. Overall, it highlights the necessity for the scientific community that the Queen Mary University London and PACE investigators comply with the order to share their data. Otherwise, they will provide yet another instance of the meaninglessness of data sharing policies in the UK, and bring embarrassment to the UK, Queen Mary University, and their own investigator team.

Disclosure: Klaas discusses an interesting request at the University of Groningen for the data from a student’s PhD thesis and how it was resolved. This reflects well on the University, where I have an appointment in the Division of Health Psychology, UMCG. I, not any institutional affiliation, have responsibility for the content of by blog posts.

Klass’ comment:

The “European Code of Conduct for Research Integrity” (ESF/ALLEA, 2011 states: “All primary and secondary data should be stored in secure and accessible form, documented and archived for a substantial period. It should be placed at the disposal of colleagues.”
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Such a statement is also part of Principle 3 (“Verifiability”) of the VSNU “The Netherlands Code of Conduct for Academic Practice” . The Dutch Code states:

“Raw research data are stored for at least ten years. These data are made available to other academic practitioners upon request, unless legal provisions dictate otherwise.”

All researchers at any of the 14 Dutch research universities must always work fully in line with this VSNU Codes, and already since 1 January 2005. Complaints can be filed when there are indications that a researcher is violating any of the rules of the Code. [See here for English versions of the current guidelines at RUG (University of Groningen.
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Frank van Kolfschooten, a science journalist, reports on 1 July 2015 in the Dutch newspaper NRC about a recent case at RUG of researchers who refused to share raw research data of a PhD thesis with colleagues. RUG concluded that these researchers, Dr Anouk van Eerden and Dr Mik van Es, had violated the rules of research integrity, because they refused to share the raw research data with others (Dr Peter-Arno Coppen [Radboud University Nijmegen], Dr Carel Jansen [RUG] and Dr Marc van Oostendorp [Leiden University]. These three researchers had filed a complaint at RUG when both researchers of RUG were unwilling to provide them access to the raw research data.
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At RUG, all PhD candidates are even obliged to promise, in public and during the PhD graduation ceremony, that they will always work according to the VSNU Code of Conduct. This is already the case for around two years.
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I am currently confronted with a very persistent refusal of a researcher of Oxford University, Dr Adrian Pont, to give me access to the raw research data of a questionable paper. Details are listed here. Dr Pont is the Associate Editor of the journal in question, but is persistently refusing to start a scientific dialogue with me about this case. There have as well been multiple contacts from my side with (officials at) Oxford University. I was turned down, and already a few times. I fail to understand how the current acting of Oxford University and the current behaviour of Dr Pont is in line with current policies.

In a subsequent email, Klaas added:

All researchers at any of the Dutch universities must make in advancement good arrangements with non-university parties on the topic of data sharing when starting to collaborate with such a party. The funding body NWO for example takes it of course also for granted that all raw research data of published work (= papers in scientific journals) are of course available to other scientists, for example to check the findings. That’s simply how research is organized.

Let’s hear it for the Dutch, and public funding sources and regulatory bodies in the UK and United States please take note.

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3 thoughts on “Data sharing policies: Do the Dutch do it better?

  1. The Pubmed entry http://www.ncbi.nlm.nih.gov/pubmed/21334061 of the 2011 paper in The Lancet about the PACE trial lists 20 authors:
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    B J Angus, H L Baber, J Bavinton, M Burgess, T Chalder, L V Clark, D L Cox, J C DeCesare, K A Goldsmith, A L Johnson, P McCrone, G Murphy, M Murphy, H O’Dowd, PACE trial management group, L Potts, M Sharpe, R Walwyn, D Wilks and P D White (re-arranged in an alfabetic order).
    .
    http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(11)60096-2.pdf (and also http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext ) lists 19 authors.
    .
    Both entries state that all 19 authors are acting ‘on behalf of the PACE trial management group†’. and “†Members listed at end of paper”.
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    The end of the paper (page 835) states: “PACE trial group.”
    .
    This term is not identical to “PACE trial management group”. In total another 19 names are listed: Hiroko Akagi, Mansel Aylward, Barbara Bowman Jenny Butler, Chris Clark, Janet Darbyshire, Paul Dieppe, Patrick Doherty, Charlotte Feinmann, Deborah Fleetwood, Astrid Fletcher, Stella Law, M Llewelyn, Alastair Miller, Tom Sensky, Peter Spencer, Gavin Spickett, Stephen Stansfeld and Alison Wearden.
    .
    So are all these 19 people also some sort of co-author of this paper?
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    There is no overlap with the first 19 people who are listed as author of the paper. So how many people can claim to be an author of this paper.
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    Do all 38 people endorse the full contents of the paper?
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    The paper has also many affiliations:
    * Queen Mary University of London, UK
    * King’s College London, UK
    * University of Cambridge, UK
    * University of Cumbria, UK
    * University of Oxford, UK
    * University of Edinburgh, UK
    * Medical Research Council Clinical Trials Unit, London, UK
    * South London and Maudsley NHS Foundation Trust, London, UK
    * The John Radcliffe Hospital, Oxford, UK
    * Royal Free Hospital NHS Trust, London, UK
    * Barts and the London NHS Trust, London, UK
    * Frenchay Hospital NHS Trust, Bristol, UK;
    * Western General Hospital, Edinburgh, UK
    .
    Am I right to assume that all 38 people (names see above) and all affilations / institutes plainly refuse to give critics / other scientists / patients / patient groups (etc.) access to the raw research data of this paper and am I am right with my assumption that it is therefore impossible for all other scientists (etc.) to conduct re-calculations, check all statements with the raw data, etc?
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    Excuse me very much, but I totally fail to understand how this is possible, (1) in the Dutch context, (2) in the context of the policy of the funders, (3) in the context of the public interest in this topic, (4) in the context of how to teach students how to become a good researcher, etc.

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    • Thank you for documenting your points. One issue that occurs to me is that with such a wide range of individuals and institutions involved, it is next to impossible to get independent peer review at either the grants or the paper level. Too many people and institutions have appearances of conflicts of interest. I think this represents a serious problem. Sensitized to it, the German government largely relies on non-Germans to review the grants in order to avoid cronyism and interinstitutional rivalries. I think the system works very well there and should be adopted by the British.

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