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Action for ME letter in support of PACE trial data release

Discussion in 'General ME/CFS News' started by Simon, Mar 1, 2016.

  1. Simon


    Monmouth, UK
    I don't know if this has been posted elsewhere already
    Our letter in support of PACE trial data release | Action for ME

    February 26, 2016

    Our Chair of the Board of Trustees, Alan Cook, has written to the Records and Information Compliance Manager at Queen Mary University of London to support the release of data related to the PACE trial.

    The text of the letter is as follows:

    In an online statement (Release of individual patient data from the PACE trial, 18 December 2015), investigators of the PACE trial stated that they are seeking “ethical and scientific advice, as well as the advice of patients, on how best to provide independent decisions about appropriate access to relevant data.”

    As the largest UK charity for people with M.E., we have received considerable feedback on this issue. We have encouraged individuals to make their views known through appropriate channels, and have also chosen to get in touch with you directly to share them.

    While we have had contact from a very small number of individuals who have some concerns with the issues regarding consent about sharing data, the overriding view of our supporting members and others is that anonymised data should be shared.

    In the interests of transparency, Action for M.E. supports the sharing of all research data to enable replication and validation. As a point of principle, it is important that research data is used to its full potential and that as much benefit as possible is derived from it. This means that the investment in collecting and producing data should be maximised by enabling other researchers to analyse the data and generate more research findings.

    In light of this, Action for M.E. strongly supports the release of anonymised data from the PACE trial in accordance within current scientific principles on the release and sharing of raw data. As a charity, we will now be taking action to ensure that these principles are embedded in our own practice in relation to consultations we undertake and research funding that we provide.

    We note that some anonymised data has already been released to the authors of the Cochrane review, without the need for additional consent. While we also note that there are specific arguments put forward by QMUL for not releasing the data requested, we also understand that the Information Commissioner will make a ruling based on all the facts and information available to him[*].

    We therefore respectfully request that QMUL reconsider their position and release the requested anonymised data.


    I think this is a significant step forward from Action for ME, and they deserve credit for listening to members and other patients.

    [*Technically, the Information Commissioner has already ruled in favour of releasing data, the current situation is QMUL are appealling against that ruling to the independent FOI tribunal - an appeal the ICO is contesting. This letter from AfME, alongside similar letters from most other charities, might help persuade the tribunal to reject the appeal and order release of the data]
    JaneH, Mark, daisybell and 16 others like this.

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