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Tribunal was right to order [QMUL to] release of chronic fatigue trial data

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    QMUL spent over £200,000 on legal advice for just this one tribunal, and now seem to be preparing to try to appeal once again. Aynone concerned about the way data can be spun and misrepresented by researchers should be concerned about this case, and QMUL's fight to smear patients who want independent scrutiny.

    Good science doesn’t need protectionThe detail of the tribunal report
    is interesting; it reveals the complexity of data protection and the arguments on both sides. QMUL claimed that releasing data would breach patient confidentiality, might jeopardise follow up studies and damage the reputation of the college. Matthees pointed out, and the commissioner agreed, that since the QMUL team had already made the data available to chosen colleagues the first argument was unconvincing. It was unclear why access by other researchers to the data would threaten follow up studies. Matthees argued that QMUL would be more likely to damage its reputation by losing patient trust.

    The core of the dispute appears to be that the QMUL authors feel they are entitled to protect their study from those who might wish to discredit their interpretation. Hopefully, we are moving towards a consensus that there is no such entitlement. If scientific interpretation is poor it deserves no protection. If it is good it needs none.

    The essence of the response from the information commissioner was that the QMUL authors had overstated their case in terms of likely damage from release of personal data. The authors and one witness painted a picture of irresponsible animal rights-type activists who might deliberately target trial patients as part of a political smear campaign. Essentially the authors were claiming that because those asking for data were patients or others associated with them they should not be considered responsible enough to have access to anonymised data. In the end they had to admit they had no grounds for this view.

    From my perspective the importance of this decision is in emphasising that everyone has the right to access to scientific data and to express their opinion. Confidentiality of patient identity is essential but should not be used as a smokescreen. If scientists knew when they entered data into workbooks or spreadsheets that everyone would be entitled to scrutinise them the quality of data collection and interpretation might improve a great deal.
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