Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

New Scientist mentions PACE trial "open data" controversy in editorial (9 Feb 2017)

Discussion in 'General ME/CFS News' started by Sasha, Feb 9, 2017.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,189
    UK
    Wow, surprise...

    Just got this week's new issue from the newsagent's and behold, on the first page:

     
    Sea, Invisible Woman, Cohen2 and 33 others like this.
  2. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,133
    Likes:
    3,822
    Bristol
  3. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,189
    UK
    Jenny TipsforME likes this.
  4. hixxy

    hixxy Senior Member

    Messages:
    1,120
    Likes:
    1,288
    Australia
  5. Keith Geraghty

    Keith Geraghty Senior Member

    Messages:
    155
    Likes:
    3,290
    I would like to think my 'Pace-Gate' Editorial brought some attention in addition to other great works like the re-analysis paper - giving editors and writers fuel to write these short pieces on this controversy - ie we raise our heads above the parapit and then its easier for others too also
     
    Sea, Invisible Woman, Cohen2 and 22 others like this.
  6. Cheshire

    Cheshire Senior Member

    Messages:
    1,121
    Likes:
    8,999
    Short answer by Michael Sharpe:

    https://www.newscientist.com/letter...can-share-data-only-when-rules-are-respected/
     
    slysaint likes this.
  7. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    We can share data only when rules are respected

    that's rich coming from a PACE researchero_O
     
    Valentijn, Barry53 and Cheshire like this.
  8. user9876

    user9876 Senior Member

    Messages:
    2,583
    Likes:
    18,182
    The tribunal judge pointed out that this attitude is not legal under the DPA (data protection act). If the data is PII and people have not consented for it to be shared then they cannot share it. They did not have explicit consent to share personal data. This means they have either broken the DPA or the data they shared is not PII and there is no confidentiality issue which is what the court rule for the requested set of data. There is a potential gray area with confidentiality and reidentification.

    They had also been lying when they claimed that they shared data with independent scientists at the cochrane collaboration as they were involved in the protocol design. They seem to have dropped this claim of independence.

    Perhaps we should remember that they have been cherry picking who can see the data to be only those who agree with them.
     
    hixxy, Webdog, Valentijn and 2 others like this.
  9. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,704
    UK
    The PACE authors' stock in trade it would seem.
     
    Valentijn likes this.
  10. Sasha

    Sasha Fine, thank you

    Messages:
    12,782
    Likes:
    34,189
    UK
  11. Tyto alba

    Tyto alba

    Messages:
    83
    Likes:
    335
    How/when did PACE trial participants give consent for data to be shared with non-PACE trial researchers?
     
  12. user9876

    user9876 Senior Member

    Messages:
    2,583
    Likes:
    18,182
    It makes me wonder why the editor is so weak that they are not prepared to defend the criticism that they made.

    Sharpe claims they have shared with other scientists (claiming many times) trying to give the impression that it is with many groups but then they can only quote one actual groups who have received data and that is when they were involved in the writing of the analysis protocol. We know others have been turned down and not because they wouldn't respect confidentiality because they weren't asked. It would be interesting for QMUL to release the names of the groups and what data they have shared.

    If QMUL really consider the data as personal data then they have broken the law (Data protection act) in sharing since they didn't have explicit permission. This was pointed out in the FoI tribunal ruling. Again here they only managed to quote Cochrane as data recipients and had to drop their claim that they were "independent scientists". The FoI tribunal of course ruled that the small amount of requested data was not PII (Personally Identifiable Information) and hence can be released. If they have shared more with others then there is no reason why they shouldn't share more publicly although there may be arguments over reidentification.

    They have of course promised to share data when they published in PLOS - instead PLOS have demonstrated an unwillingness to support their own policies.
     
    Valentijn, mango, Esther12 and 8 others like this.
  13. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,535
    Germany
    They probably have to allow Sharpe a right of reply. Maybe they will also allow publication of a letter replying to Sharpe's drivel which makes the points you've raised?
     
  14. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    I thought that they didn't criticise PACE in the first place, and that seemed very weak. In UK science, people seem afraid to criticise PACE. Seems that they know where the interests of the establishment lie, and they're not willing to challenge that.
     
    Last edited: Feb 24, 2017
    Sean, trishrhymes and John Mac like this.

See more popular forum discussions.

Share This Page