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Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
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"Opening a can of data-sharing worms" (General, not specific to any specific medical research)

Discussion in 'Other Health News and Research' started by Dolphin, Sep 11, 2013.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    It talks about the difficulty of getting data from trials, with only 7% of it accessible from 1991.

    This, it could be argued, is possibly one reason why it is important that data be given out with Freedom of Information Act requests; if it's not released now, it may never be released.
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  3. Dolphin

    Dolphin Senior Member

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    I do get frustrated when the discussions only focus on industry.
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  4. Dolphin

    Dolphin Senior Member

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    Unfortunately with non-pharmacological interventions like CBT and GET, there is little if any regulation.
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  5. Esther12

    Esther12 Senior Member

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    Ta D.

    At the very least, data should be backed up at shared centres in a standard format. Crazy to have this stuff slipping through our fingers.
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  6. Dolphin

    Dolphin Senior Member

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    Yes, although would still need to be maintained I imagine with software changing over time.
  7. user9876

    user9876 Senior Member

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    There is a whole archive industry which aims at keeping data secure, searchable and available (with growth driven by the e-discovery rules in the US). If universities cannot run systems with professional data security and data retention policies then they shouldn't be allowed to run trials. I say that from the perspective of both funding and the ethics committee approving a trial. Patients agree to take part in a trial to help move treatments on - to not properly store data to back up results is breaking the trust of patients.

    I remember there was a series of letters where someone points out an issue with stats in one of Wessely's papers and his response was oh the data has been lost due to a computer theft. This is just not an acceptable answer for a professional research organization where data should be kept secure, computers physically secured and offsite backups kept. I have talked to a few people working at university IT departments who basically have a huge problem because academics want to do their own thing and don't use the services offered.

    The data they have is not large and can be archived in comma separated lists which is about as basic a format as is possible. I think scanned copies of all patient survey data should also be kept (as pdfs) which is a common archive format and I believe that there are processes in place to preserve the format if Adobe ever go bankrupt.

    Drug companies are very aware of the data archive problems and have appropriate systems in place.

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