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GidMK's profile
Health Nerd
Health Nerd
Health Nerd
Verified account
@GidMK

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Health NerdVerified account

@GidMK

Epidemiologist. Writer (Guardian, Observer etc). "Well known research trouble-maker". PhDing at @UoW Host of @senscipod Email gidmk.healthnerd@gmail.com he/him

Sydney, New South Wales
theguardian.com/profile/gideon…
Joined November 2015

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    1. Health Nerd‏Verified account @GidMK Jun 15
      Replying to @TamarHaspel

      That's a great fix for some things, but not for others. Also data sharing is very good in some areas, but when you're working with massive population health datasets it's often impossible to share even deidentified raw data

      1 reply 0 retweets 1 like
    2. Tamar Haspel‏Verified account @TamarHaspel Jun 16
      Replying to @GidMK

      You're right, of course, that it won't fix everything. But it's a pretty decent start. But why do you think it's impossible to share deidentified data? The only plausible argument I've heard is if it's a very rare disease or something where a person could by IDs by demographics

      1 reply 0 retweets 0 likes
    3. Health Nerd‏Verified account @GidMK Jun 16
      Replying to @TamarHaspel

      The datasets I work with are only deidentifiable to a point. You can often reidentify people with a reasonable degree of accuracy once you've got 200+ fields of information on them

      1 reply 0 retweets 0 likes
    4. Tamar Haspel‏Verified account @TamarHaspel Jun 16
      Replying to @GidMK

      Fair point. Are there studies that use 200+ fields? FFQ data, maybe?

      2 replies 0 retweets 0 likes
    5. Health Nerd‏Verified account @GidMK Jun 16
      Replying to @TamarHaspel

      Pretty much any large public health database will have that information, whether or not every field is used in the study

      1 reply 0 retweets 0 likes
    6. Tamar Haspel‏Verified account @TamarHaspel Jun 16
      Replying to @GidMK

      But if you don't use every field, you can just make public the ones you use, yes?

      1 reply 0 retweets 0 likes
    7. Health Nerd‏Verified account @GidMK Jun 16
      Replying to @TamarHaspel

      Potentially, but even if it is in theory possible the layers of beaurocracy make it understandably hard to do. Public health data is incredibly well protected in most places (for good reason)

      1 reply 0 retweets 0 likes
    8. Tamar Haspel‏Verified account @TamarHaspel Jun 16
      Replying to @GidMK

      I think a bureaucracy problem is a very different problem from a security problem. If we're going to make data-sharing the norm, we're obviously going to need new rules and procedures. But I think that's what we should work toward.

      1 reply 0 retweets 0 likes
    9. Health Nerd‏Verified account @GidMK Jun 16
      Replying to @TamarHaspel

      I'm not sure I agree in this context. Datasets in public health are mostly collected from people who do not explicitly consent to research and the data is used under very strict conditions - it's a big ask to share that regardless of the context

      1 reply 0 retweets 0 likes
    10. Tamar Haspel‏Verified account @TamarHaspel Jun 16
      Replying to @GidMK

      If people didn't consent to research, why is there research using their data? And, I guess, why is there data? My impression was that people generally *did* consent to research, but with limits.

      1 reply 0 retweets 0 likes
      Health Nerd‏Verified account @GidMK Jun 16
      Replying to @TamarHaspel

      Depends on where you live, but often large public health research projects are done under a waiver of consent because of the deidentified nature of the research - this is then subject to very strict oversight which becomes impossible if you share the data freely

      4:54 AM - 16 Jun 2021
      • 2 Likes
      • Tamar Haspel Thomas Olsen
      2 replies 0 retweets 2 likes
        1. New conversation
        2. Tamar Haspel‏Verified account @TamarHaspel Jun 16
          Replying to @GidMK

          I think that's where all the conversations about this bog down. And sometimes I think it's much more convenient for researchers not to share data, and claims of contractual issues allow them to do this. But the privacy concerns are of course legit - I just think they're solvable.

          1 reply 0 retweets 2 likes
        3. Health Nerd‏Verified account @GidMK Jun 16
          Replying to @TamarHaspel

          I do think there's a very real disconnect between the ambitions of data sharing and the expectations of someone whose data is being used in some of these studies. They might consent to have their information used in the study, but sharing it widely is another thing

          1 reply 0 retweets 0 likes
        4. Show replies
        1. JH // from fairest tweeps we desire increase‏ @jhan2qt Jun 16
          Replying to @GidMK @TamarHaspel

          in the EU you have to inform persons about the intented use of the data. Using it for other purposes is not allowed. Also, people have the right to withdraw consent anytime, which would require to delete their non-anonymous data from every (!) dataset that includes it.

          0 replies 0 retweets 2 likes
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