What if the original producers of clinical trial data - the patients - could seize ownership of their own clinical data, and then publish and redistribute it as they saw appropriate? Or equivalently, if patients demanded transparency of primary data (hopefully in collusion with their doctors) as a precondition to consenting to become clinical subjects?

It’s analogous to users taking ownership and exerting control over their clickstream and attention data

One Response to “quick: medical data ownership and transparency”

  1. FeelingFlirty Says:

    Patients should own their data because without them, there is no trial. It would take everyone participating in a trial to get copies of their own data for this to work, wouldn’t it?

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