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FOI request re PACE Cost-Effectiveness Analysis

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by JohnTheJack, Jan 3, 2019.

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  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    can someone follow this up.
     
    Sly Saint, Aug 13, 2019
    #21
    Kitty, ladycatlover, JohnTheJack and 8 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    I did a quick search for PACE but the form is a bit awkward. Can't search by author and I'm not sure which terms were used. Nothing for CFS, which I assume is what would be used, and it's not even in the list of medical conditions.

    But when there are no results there is an option to make an enquiry about the availability of data. Might it be worth the trouble?
     
    rvallee, Aug 13, 2019
    #22
    Kitty and Sly Saint like this.
  3. JohnTheJack

    JohnTheJack Moderator Staff Member

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    From the MRC today:

    I'll chase them up later on in the year again. No idea why they're taking so long.
     
    JohnTheJack, Oct 16, 2019
    #23
    MEMarge, Mithriel, Willow and 10 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    Possibly still negotiating a deal :whistle:
     
    NelliePledge, Oct 16, 2019
    #24
    MEMarge, Mithriel, Annamaria and 2 others like this.
  5. WillowJ

    WillowJ Senior Member (Voting Rights)

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    https://www.clinicalstudydatarequest.com/Help/Help-Review-of-Requests.aspx

    Here's a link to how requests are reviewed. Stage 1 is conducted by Wellcome Trust.

    Stage 3 is conducted by the Independent Review Panel, which is administered by Wellcome Trust.

    Lots of room in Stage 2 for study sponsors/funders to deny requests for frivolous reasons.

    E.T.A.-just to be clear, the denial is what I'm calling frivolous
     
    Last edited: Oct 20, 2019
    WillowJ, Oct 20, 2019
    #25
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  6. JohnTheJack

    JohnTheJack Moderator Staff Member

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    The data have now gone up on the site.
    https://www.clinicalstudydatarequest.com/Posting.aspx?ID=20098


    I'm not sure what 'analysis ready dataset' means. 'Raw data' are not available.



     
    JohnTheJack, Dec 17, 2019
    #26
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  7. Trish

    Trish Moderator Staff Member

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    How do you get at the data. I just see outlines of the research on the two links.
     
    Trish, Dec 17, 2019
    #27
    Kitty, Barry, ME/CFS Skeptic and 1 other person like this.
  8. JohnTheJack

    JohnTheJack Moderator Staff Member

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    JohnTheJack, Dec 17, 2019
    #28
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  9. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Lucibee, Dec 17, 2019
    #29
    Esther12, MEMarge, Kitty and 1 other person like this.
  10. Barry

    Barry Senior Member (Voting Rights)

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    This is as far as I can get. Do you need to login to get any further? None of the links seems to get me to it.

    upload_2019-12-17_12-49-46.png
     
    Barry, Dec 17, 2019
    #30
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  11. Lucibee

    Lucibee Senior Member (Voting Rights)

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    You have to apply to the IRP for access, having submitted a research plan, details of sponsorship etc and presumably agreeing to all the T&Cs. This is designed to exclude the likes of us having a go.
     
    Lucibee, Dec 17, 2019
    #31
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  12. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I have sent off for clarification of what data are available and some other information.

    I'll update when I know.
     
    JohnTheJack, Dec 17, 2019
    #32
    ukxmrv, Mithriel, Chezboo and 9 others like this.
  13. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    What a swizz! (to quote Molesworth)
     
    ladycatlover, Dec 17, 2019
    #33
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  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Does J. Coyne know this data is now up? (I think he requested it eons ago)
     
    Sly Saint, Dec 17, 2019
    #34
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  15. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I haven't communicated with him yet. I'm going to wait on the clarifications from the MRC that I have requested this afternoon.
     
    JohnTheJack, Dec 17, 2019
    #35
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  16. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    How many aeons will that take? Christmas is coming, then New Year, I bet they're all on holiday already. I imagine you won't get a sensible response before Mid January at the very earliest. Though obviously I hope I'm proved wrong.
     
    ladycatlover, Dec 17, 2019
    #36
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Fotherington-Tomas will apply, you can bet.
     
    Jonathan Edwards, Dec 17, 2019
    #37
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  18. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Yes, it's likely to be about then, especially as I have asked for some information that they may refuse to release and that could take some time to gather.
     
    JohnTheJack, Dec 17, 2019
    #38
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  19. Adrian

    Adrian Administrator Staff Member

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    Also the data release is very controlled in that if I understand correctly if you get the data you get access to it via an SAS cloud where you can do stats:
    I don't believe this is down to privacy of patients because if the data included any personal information then I would have thought they would be risking breaking DPA/GDPR by allowing such management and access. I.e. the data is being shared with third parties not specified and not within the bounds of any privacy agreement. I think the PACE information tribunal were clear on this when they shared patient level data with other groups.

    So this is really about control over the data and results. It stops anyone with access doing speculative analysis.
     
    Adrian, Dec 18, 2019
    #39
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  20. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    In other words it's a Swizz. :mad:
     
    ladycatlover, Dec 18, 2019
    #40
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