The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia

Discussion in 'General ME/CFS News' started by A.B., Feb 8, 2016.

  1. A.B.

    A.B. Senior Member

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  2. adreno

    adreno PR activist

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    From reading the blog, it seems Schneider is understanding of the PACE authors claims that data cannot be released due to privacy concerns:

    Apparently, the participants didn't sign up for public release of the data and so it cannot be done.
     
  3. worldbackwards

    worldbackwards A unique snowflake

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    If so, then why did they spend so much time having a go at vexatious patients and referring to PR as some sort of terror organisation?
     
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  4. adreno

    adreno PR activist

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    Good question. Ask the blog author.
     
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  5. BurnA

    BurnA Senior Member

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    Yes but they did share the data with other researchers didn't they ?
     
  6. adreno

    adreno PR activist

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    Did you read the blog? Apparently sharing with other researchers doesn't violate patient consent.
     
  7. BurnA

    BurnA Senior Member

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    Yes but Coyne is a researcher isn't he ?
     
  8. adreno

    adreno PR activist

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    Right. But PLOS is open access.

    So the question becomes, why did they want to publish in an open access journal and then claim patient confidentiality?
     
  9. BurnA

    BurnA Senior Member

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    I think they messed up. Shows how stupid they are.
     
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  10. user9876

    user9876 Senior Member

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    But that leads to the question what is a researcher. Can I give that label to myself. Does a researcher need to work at a university? Or do I need a publication record?

    Somewhere I saw something about being able to keep information secure but universities don't have a good reputation for enforcing adequate security processes and monitoring on staff.
     
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  11. Valentijn

    Valentijn The Diabolic Logic

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    No, there are two separate issues. One is "personal data", and the other is the anonymized data from participants. Restrictions regarding the sharing of outcome data only apply to data which can personally identify patients.

    No personal data is requested from PACE, and anonymized individual data from other trials is often made completely public already, such as in the case of a recent FINE trial publication.

    The PACE team is erroneously (and vexatiously :D) expanding "personal data" to include "all data".
     
  12. Sasha

    Sasha Fine, thank you

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    I thought this was generally good, with a few misconceptions - I liked that he published an exchange with Wessely in which someone challenged him on why there was a need for a broker for the data.

    There are some excellent comments - really stellar. I've just left one that's held in moderation (or the universe has eaten it).
     
  13. jimells

    jimells Senior Member

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    And besides, the Information Commissioners Office has already ruled on these issues and ordered the release of the data. Doesn't that count for something?
     
  14. Sasha

    Sasha Fine, thank you

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    Did everyone else's comments go straight through? I think I'm stuck in his spamtrap. :(
     
  15. snowathlete

    snowathlete

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    Very good comment from D.G. at the bottom, which I think is new? Not the only good comment there, but this one stands out to me. Worth going to read the others as well though.
     
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  16. Valentijn

    Valentijn The Diabolic Logic

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    No, mine was held first. When I posted, there was only one comment, so the other 10 probably got approved at the same time a bit later.
     
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  17. Sasha

    Sasha Fine, thank you

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    Oh! Now I'm there - in my poorly formatted second version (sorry, folks - careless posting!).
     
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  18. Invisible Woman

    Invisible Woman Senior Member

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    It is my understanding that the participants' will have allowed access to their medical records as part of this trial and presumably these records will have been updated as the trial progressed. These trials took place in an NHS hospital setting so this data will ultimately be available (although not in a nice, neat, ready to use form) under care.data anyway.

    For those of you not in the UK: care.data has 2 parts. One allows the uploading of your GP's medical records. You can opt out of this part. The 2nd part consolidates all of your hospital records and stores them in one place. You have no choice here. Pseudo-anonymized data can then be sold to anyone who wants it- without your knowledge or permission - because it is pseudo-anonymized the data protection act doesn't cover it.

    Now the thing with pseudo-anonymized data is that if you buy several datasets that include records from the same person /people it is possible to identify them.

    So, it is possible this data will be available for a price anyway. If you are motivated enough to figure out and buy appropriate datasets.

    Anyone who wants to know more about care.data:
    http://www.care-data.info/

    It is possible I am mistaken in this but I don't think so...
     
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  19. Valentijn

    Valentijn The Diabolic Logic

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    This isn't the sort of data which has been requested, nor which should be at all available to the public.

    The data requested from PACE is simply stuff like questionnaire scores and treatment arm. Even age, length of illness, enrollment data, and similar are not being asked for. It would be literally impossible to identify anyone with the requested data, even if collated with data which is personal.
     
  20. Invisible Woman

    Invisible Woman Senior Member

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    I know. The PACE crew claim to be denying access to fully anonymized data requested to protect patient confidentiality. However, open.data makes it possible to access parts of patient records albeit pseudo-anonymized. If you have access to multiple datasets then it is technically possible to identify patients.

    So I am suggesting that deny access to fully anonymized data from the research trial is a bit like carefully locking the gate to a field with broken fences.
     

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