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U.K. House of Commons Science committee public can propose topics by 29 Nov

Discussion in 'Advocacy Projects and Campaigns' started by NelliePledge, Nov 16, 2018.

  1. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
    UK West Midlands
    MEMarge, Indigophoton, MeSci and 10 others like this.
  2. Sasha

    Sasha Senior Member (Voting Rights)

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    UK
    What about a general investigation into the use of open-label/subjective-measures as primary outcomes in behavioural trials that affect millions of patients, @Jonathan Edwards? (Seriously.)

    Edit: More broadly, this is an issue of low standards in research that affects anyone in the UK who ends up on the receiving end of CBT or any other behavioural intervention - and it's likely to be doing untold damage to enormous numbers of patients while taxpayers are forking out millions of pounds for it.
     
    Last edited: Nov 17, 2018
    Graham, MeSci, rvallee and 9 others like this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

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    Based on @dave30th latest blog I would think looking at research ethics compliance
     
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    2,037
    How about the failure of peer review in medical/science journals as this could take in

    • The problems of subjective measures in open labelled trials
    • Failure to report objective measures used
    • Outcome switching
    • Problems with research definitions of conditions (Oxford criteria, etc)
    • Failure of ethical approval system
    • Describing trials running pilot studies into full studies as prospective
    • Croneyism (harder perhaps to present clear cut evidence)
    • Failure of journals to police this in published papers once it is pointed out to them
     
    MEMarge, Graham, MeSci and 7 others like this.
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,126
    Would be good to get some PACE relevant stuff raised.
     
  6. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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  7. KarenSW

    KarenSW Established Member

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    9
    Darren Jones is also on the committee and he is onboard after myself and Natalie Boulton met with him in September. Graham Stringer is also a strong supporter of ME campaigns. There is real scope for this committee helping in some way. We just need to get one of the conservatives on the committee up to speed and on side because any proposal will need cross party support.
     
  8. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    703
    @Jonathan Edwards would you please also be able to add to any submission, by commenting on the meeting when you and @dave30th met with Darren Jones MP Bristol NorthWest (also S&T Committee member)?
     
  9. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    Messages:
    703
    Side note:
    Please note that @KarenSW is still ‘desperately seeking’ constituents of Conservative MPs on this committee:

    https://www.s4me.info/threads/uk-parliament-science-and-technology-select-committee.6535/
     
  10. Natalie

    Natalie Established Member (Voting Rights)

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    94
    It says it is for 'the wider public' to suggest topics and send in a submission, not just the science community. "an open opportunity for the science community and the wider public to suggest science and technology areas for scrutiny.
     
  11. Graham

    Graham Senior Member (Voting Rights)

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    3,310
    Do psychologists and psychiatrists get an easy ride when it comes to evaluating or reviewing medical studies?
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    Open access to suitably anonymised data that published trial results are based on, so the wider community does not have to rely solely on authors' interpretations of their findings, but so findings can be independently evaluated. Also ensure that trials are designed, especially their data structure and storage, so that anonymisation can be achieved with minimal restrictions on open access. If done properly then the bulk of useful data should be available for open access.
     
    MEMarge and ladycatlover like this.

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