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Smith - Time for sharing data to become routine: the seven excuses for not doing so are all invalid

Discussion in 'Other Health News and Research' started by worldbackwards, May 3, 2016.

  1. worldbackwards

    worldbackwards Senior Member

    Richard Smith manages not to have a pop at patients this time.
    TiredSam, BurnA, John Mac and 15 others like this.
  2. Woolie

    Woolie Senior Member

    From the article:

    The seven incentives not to share
    1. Others will use my data to produce publications without having to go to the trouble of gathering them
    2. Other researchers might scoop me
    3. I fear my conclusions will not be replicable.
    4. Critics analysing the data may come up with different or contrary results
    5. Sharing the data may expose horrible weaknesses, flaws, and inconsistencies in the way we coded and stored our data
    6. (for those who do research with patients) concerns about patient confidentiality.
    7. “technical reasons.”

    It seems to me there are still little hints in the article that in the case of PACE its probably okay to withhold the data, because there are legitimate concerns about confidentiality. And no way to address them without contacting all the patients and asking them.
    Justin30, barbc56, Valentijn and 2 others like this.
  3. barbc56

    barbc56 Senior Member

    Patient confidentiality, is the lamest excuse used but the one that may be the easiest believed by those who don't know how data is collected and used in a study. Understandably, most people don't know.

    The US is obsessed with patient privacy, HIPPA for example. I don't know about other countries.

    While the the reasoning for patient privacy in a medical setting is sound, that issue is a far cry from data in a lab.
    Woolie likes this.
  4. ukxmrv

    ukxmrv Senior Member

    Woolie, Justin30 and barbc56 like this.
  5. barbc56

    barbc56 Senior Member

    Looks like this is in the UK. I could be wrong but I think it would be illegal here in the states.

    ETA Now I'm really confused the article is saying patient names and medical histories will be available yet encrypted. I don’t think you can do both.

    Like others, I am puzzled by the kidney injury. Are they talking about injuries from an outside sourse such as a car accident or more likly kidney conditions that can cause damage. Using kidney injuries is rather vague.

    I think you can sign something that prohibits releasing your records and if not there should be. I know I signed a paper whether or I wanted my psychiatric records made public within the medical center. I said no to get access to my therapy sessions but yes to the psychiatrist where I go, they don't really do counseling.
    Last edited: May 4, 2016
  6. Art Vandelay

    Art Vandelay Senior Member

    Adelaide, Australia
    I was chatting to some former colleagues recently about the PACE trial and data sharing more generally.

    They were horrified by what has occurred with PACE of course. They mentioned that there is a very small (but hopefully growing) push within the bureaucracy here in Australia to ensure that all researchers who obtain public funding for their research make the data that they collect publicly available.

    Obviously this is very early days and will require action from politicians eventually, but it's hopefully a small step in the right direction.
    AndyPandy, mango, BurnA and 2 others like this.

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