3 ms·

The phrase "medical data should be free" is a trojan horse. Your medical data is yours and should always be your own -- unless you yourself say otherwise for sp

The phrase "medical data should be free" is a trojan horse. Your medical data is yours and should always be your own -- unless you yourself say otherwise for specified used of specific parts of your data. Otherwise, due to market forces and financial constraints, your data will be turned against you before anything else. The quality of medical care for the majority of people doesn't depend on the freedom of your data but on the quality of communication between doctors and patients and between health professions. These are low tech problems though for which you cannot get much research funding.

officialchicken 11y ago
I agree. Medical data must not be free in any way, shape, or form. It would only be used to drive up the price of delivery in the form of fatter profit margins. > "Otherwise, due to market forces and financial constraints, your data will be turned against you before anything else" Currently, it's using "manufacturer coupons" for meds, given out at your doctor's office and then filled at your local Rx to skirt around HIPAA. Each one has a unique serial number for a reason. Research data, on the other hand, must be more free - but there are no standards for anonymization of patient data prior to release.
- dharma1 11y ago
  I agree, would be fantastic to have equivalents of ImageNet for different types of medical images - high quality, pref labeled anonymised data sets where the data set size is sufficiently large to train high quality networks.
mfburnett 11y ago
How do you feel about not being able to share in the profits of the commercialization of your medical data and other discarded cells (i.e. blood samples, hair)? Because that's the legal precedent right now in the United States: https://en.wikipedia.org/wiki/Moore_v._Regents_of_the_University_of_California#Cultural_impact https://en.wikipedia.org/wiki/Moore_v._Regents_of_the_Univer...

officialchicken 11y ago

I agree. Medical data must not be free in any way, shape, or form. It would only be used to drive up the price of delivery in the form of fatter profit margins. > "Otherwise, due to market forces and financial constraints, your data will be turned against you before anything else" Currently, it's using "manufacturer coupons" for meds, given out at your doctor's office and then filled at your local Rx to skirt around HIPAA. Each one has a unique serial number for a reason. Research data, on the other hand, must be more free - but there are no standards for anonymization of patient data prior to release.

dharma1 11y ago
I agree, would be fantastic to have equivalents of ImageNet for different types of medical images - high quality, pref labeled anonymised data sets where the data set size is sufficiently large to train high quality networks.

mfburnett 11y ago

How do you feel about not being able to share in the profits of the commercialization of your medical data and other discarded cells (i.e. blood samples, hair)? Because that's the legal precedent right now in the United States: https://en.wikipedia.org/wiki/Moore_v._Regents_of_the_University_of_California#Cultural_impact https://en.wikipedia.org/wiki/Moore_v._Regents_of_the_Univer...