Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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"Is withholding your data simply bad science, or should it fall under scientific misconduct?"(July3)

Discussion in 'Other Health News and Research' started by Dolphin, Jul 4, 2015.

  1. Dolphin

    Dolphin Senior Member

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    Possibly of interest to somebody. The PACE Trial investigators have been reluctant to give out some of their data.

    http://blogs.lse.ac.uk/impactofsoci...secrecy-bad-science-or-scientific-misconduct/


     
  2. anciendaze

    anciendaze Senior Member

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    There is always the unwritten rule that those who do the work of collecting data get the first crack at analyzing it. We are well past the point where that applies to PACE. Those authors have milked about all the positive spin from their data possible.

    Now let me try a thought experiment relevant to the alleged objective improvements in patients. With a completely random binary response, like a coin flip, you could expect 50% to appear improved and 50% to appear worse. With a better range of possibilities than a single binary experiment, you should expect something like 40% better, 40% worse and 20% with no detectable change. If you resolutely ignore adverse outcomes, and do some wishful thinking, you can convert this to 60% responders and 40% nonresponders. That is what the PACE authors have reported, without detailed supporting evidence.

    By counting those who do not contribute objective data both before and after therapy as participants in the trial you can allow the effort of participating to stratify your cohort so that most of those who decline the optional walk test after therapy also happen to be those who did not benefit. This will produce an apparent improvement in an objective measure -- which will not be replicated. What you would be measuring in that case was the effort patients put into the trial, not any benefits that came out. More rigorous exercise regimes would produce better stratification.

    I don't actually know that the PACE authors did this. I don't know what they actually did. They are however behaving exactly as if allowing anyone else to examine data, and independently decide the percentage of patients who responded, would undermine their claims.
     
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  3. SOC

    SOC

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    I've been wondering about this withholding data problem. Is this a recent development, or is it more common in certain fields? When I was researching and publishing, it was a given that you included your data in appendices so that anyone could verify your conclusions. I understand that's not possible with journal page number limitations, but in that case the data was prepared for immediate release upon request.

    IMO, there's something innately dishonest about refusing to release your data. What are you afraid of? If your work is sound, you should be happy for other researchers to see what you've done. ....Oh, I see.... :p
     
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  4. lansbergen

    lansbergen Senior Member

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    Withholding data is like a constructor not informing the client what materials are used.
     
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  5. Snow Leopard

    Snow Leopard Hibernating

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    It is truly bizarre that of papers stating "data available on request", only 44% of authors actually did so on request!
     
  6. Sean

    Sean Senior Member

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    Withholding data is like demanding everybody else sign a contract you have written without giving them the chance to read it first.
     
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  7. alex3619

    alex3619 Senior Member

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    I wonder if withholding data should be considered grounds for retracting the study?
     
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  8. lansbergen

    lansbergen Senior Member

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    I think it should.
     
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  9. adreno

    adreno PR activist

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    Bad science would be flawed research methodology, or interpreting the data wrong. But deliberately withholding data is misconduct.
     
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  10. Scarecrow

    Scarecrow Revolting Peasant

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  11. alex3619

    alex3619 Senior Member

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    Secrecy is the enemy of good conduct.
     
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