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Information Commissioner's Office lets PACE Trial team/QMUL get away with not releasing some data

Discussion in 'General ME/CFS News' started by Dolphin, Mar 30, 2015.

  1. Dolphin

    Dolphin Senior Member

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    Following on from an earlier thread:
    The Information Commissioner's Office has sided with Peter Denton White/the PACE Trial team/QMUL that they don't have to release the 6-minute walking test data for the so-called recovered in the £5m PACE Trial:
    https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1043578/fs_50557646.pdf
     
    Keela Too, Roseblossom, Sean and 3 others like this.
  2. Valentijn

    Valentijn Senior Member

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    That's not a like-like, but a thanks-for-the-info-like :rolleyes:
     
    Roseblossom, SDSue, Sean and 5 others like this.
  3. Valentijn

    Valentijn Senior Member

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    Queen Mary's must be a pretty shite university, if no one working there knows how to easily retrieve data from a spreadsheet or similar.
     
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Maybe it's just one group of academics who are shite. It happens.
     
  5. SOC

    SOC

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    Probably, but still.... if you are the administrators of a serious university, would you want your researchers making a big deal of the fact that they can't retrieve their research data from spreadsheets? It's like a high school teacher claiming s/he shouldn't have to prep for classes because it would be too hard to read the textbooks. It makes your educational institution look like a bunch of morons without basic skills necessary to educate (or research).
     
  6. user9876

    user9876 Senior Member

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    Its the institutions responsibility not the individual academics
     
    SOC, Sasha, Dolphin and 2 others like this.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    People running universities are not always the most competent people.

    My own uni, for example, appeared happy to let their head of biology censor a student society ad for spurious reasons, and then let him tell lies (via the uni) to support his actions, until he was forced to back down by a lawyer. They also allowed a previous head of biology to repeatedly and shamelessly misrepresent and exaggerate the implications of his research in the university magazine.

    Yours truly was instrumental in challenging both.

    Yet this was a highly-rated uni.
     
    jimells likes this.
  8. SOC

    SOC

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    Highly-rated doesn't mean it isn't shite. If the people running the university are not competent, and the researchers can't find their backsides with both hands (ie easily find their own data), then I agree with @Valentijn, Queen Mary's looks to be a pretty shite university. Maybe it's shite in regards to scientific competence, or maybe it's just shite in basic integrity, but either way it's hard to have much respect for it as a research institution.
     
    Roseblossom, SDSue, Sasha and 2 others like this.
  9. Sean

    Sean Senior Member

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    I wonder if the tax office would accept that sort of excuse from me?

    Dear Tax Commissioner

    Sorry, just too difficult to open my spreadsheet. My little finger has a mild hangnail.

    Clearly I need an exemption from paying any tax this year, or any other year.

    I hope you find this satisfactory.

    Yours, etc
    Knobend McShady
    Chief Financial Officer of Dodgy Brothers Inc.


    :rolleyes:
     
    MeSci, Roseblossom, mango and 8 others like this.
  10. snowathlete

    snowathlete

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    I think putting it down to incompetence just lets them off the hook. The idea that it isn't easy, in this day and age, just doesn't hold water.

    It seems they have been able to cherry pick the data that presents their desired outcome. If all the data was available for scrutiny, as all scientific studies should be, then different conclusions might be reached.

    There is likely an internal view that there is something to 'lose' from being open with the data. I think that's a rather sad thing for the notion of modern scientific method and given that it is the tax payer and the patient that ultimately loses out from this information remaining hidden, I think it is doubly sad.

    Does anyone benefit from that?
    Not science.
    Not the tax payer.
    Not the patient.
    I suppose they benefit from it, or believe they do; though if their conclusions aren't solid enough to withstand transparency, one has to wonder if other researchers will continue to take them seriously.
     
    lycaena, Roseblossom, Sasha and 6 others like this.
  11. SOC

    SOC

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    Is this not releasing data thing allowed all over the world? Back in the day when I was a researcher, I was always required to include all my data as an appendix to my reports/articles. Maybe that was only a requirement of my organization or the journals I published in, but it was what I was taught to do in college and what I was required to do as a researcher, so I thought it was standard scientific practice... in the US at least.

    If it's not standard scientific practice, it certainly ought to be. The point of research is to objectively inform, not cherry-pick your data to manipulate the results to serve the researchers' personal agenda. :rolleyes:
     
    Keela Too, MeSci, Sasha and 3 others like this.
  12. RL_sparky

    RL_sparky Senior Member

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    To the person requesting the PACE data, you may have more success if you simply ask for the data file containing the exercise data with the understanding that the owners of that file should redact any personally identifying information (in the US this is referred to as de-indentifying "Protected Health Information" under HIPAA - http://www.hhs.gov/ocr/privacy/hipaa/understanding/training/udmn.pdf) from that file.
     
    Keela Too and Mark like this.
  13. Dolphin

    Dolphin Senior Member

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    Just to be clear: They did publish the 6-minute walking test data for the whole group. But Anna was looking for the data specifically for the subgroup the researchers claimed were recovered using their dodgy recovery definition.
     
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  14. SOC

    SOC

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    Not sure I understand -- did they publish the raw data (what I was required to do), or just post-analysis data -- averages, etc?

    Post-analysis "data" is not objective. It can be easily manipulated. That is why we were taught to publish our raw data separately from our calculations and conclusions -- so that other researchers could look at the data and decide whether they agreed with our calcs and conclusions.
     
    MeSci, snowathlete and Valentijn like this.
  15. Sean

    Sean Senior Member

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    We are way past incompetence as an excuse. Or any other excuse.
     
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  16. Dolphin

    Dolphin Senior Member

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    They didn't publish the raw data, just averages, etc.
     
    MeSci likes this.
  17. Dolphin

    Dolphin Senior Member

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    Another request has been made by another individual for a selection of the data that would allow the relevant figures to be calculated:
    https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#outgoing-371289

    This request was turned down by Queen Mary, University of London.
     
    Valentijn likes this.
  18. alex3619

    alex3619 Senior Member

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    Aha! I was wondering where the Dodgy Brothers got to!!!! (Aussie joke, btw)
     
    Sean likes this.
  19. alex3619

    alex3619 Senior Member

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    This could be very helpful. There are accepted standards for recovery. We could screen the data to see if anyone qualified, and if so how many. That figure sets a maximum on recovery. It might even be zero.
     
    Valentijn likes this.
  20. Dolphin

    Dolphin Senior Member

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    Oops, I wasn't clear. They only produced averages not individual scores.
     

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