Under what circumstances did they "explicitly sign-off" on the data sharing, I wonder? There are a lot of times during a hospital visit, when one could be less-than-observant of exactly what he/she is signing.
This was for a project paternship with a university and hospital to improve patient outcomes with some new exploratory tech approaches. A short document that followed some standard study participation format was generated using easily understandable language in about 1-2 pages IIRC (large fonts so it was easily readable by patients with poor eye-sight). Everything done, including the document, went through an external IRB process for human subject data and was approved. Everyone involved had to go through human subject training and what not.
Physician would mention the study to patients that would likely be good subjects for the work about the work, its goals, if they'd be interested in participating. Forms were then provided to patients involved to sign (explicitly) about their agreement to participate in the effort and how their data would be used, protected, etc. The process also required physician sign-off to confirm they read the document to the patient verbally, determined they were competent, cognizant, not under any sort of duress/intoxication, etc. The patient also needed to verbally acknowledge they agreed. Oh, and there was a clause they could retroactively pull out of the work, including their data at any point of they felt uncomfortable or changed their minds.
The patients and their data weren't the product, tech developed that would assist patients was the product of the data.
For patients who agreed, some would also be permitted to see some of the products of the work related to their data. Im forgetting a lot of the data collection process because it was very rigorous and several years ago now, but everything above bar, no dark patterny ah-ha-gotcha! line buried in a 300 page liability sign off they had to agree to for some necessary life saving treatment or anything of that nature.
I even got to meet some of the people we helped which was a bit rewarding to see people's lives improve a bit with technology. The specific patient mentioned and their neurosurgeon even let me sit in on their brain surgery tumor removal (patient's suggestion), which was a very unique experience. So yea, they knew what was going on.
With that said, not all data usage was as transparent and ethical as what I worked with, and I saw a lot of mistakes there that make me cringe thinking what a less ethical business with no transparency might do, given the opportunity.
Every doctor's visit I've had in recent memory had a data sharing agreement I had to sign (or at least, that was presented to me) if I hadn't been there before.
This was for a project paternship with a university and hospital to improve patient outcomes with some new exploratory tech approaches. A short document that followed some standard study participation format was generated using easily understandable language in about 1-2 pages IIRC (large fonts so it was easily readable by patients with poor eye-sight). Everything done, including the document, went through an external IRB process for human subject data and was approved. Everyone involved had to go through human subject training and what not.
Physician would mention the study to patients that would likely be good subjects for the work about the work, its goals, if they'd be interested in participating. Forms were then provided to patients involved to sign (explicitly) about their agreement to participate in the effort and how their data would be used, protected, etc. The process also required physician sign-off to confirm they read the document to the patient verbally, determined they were competent, cognizant, not under any sort of duress/intoxication, etc. The patient also needed to verbally acknowledge they agreed. Oh, and there was a clause they could retroactively pull out of the work, including their data at any point of they felt uncomfortable or changed their minds.
The patients and their data weren't the product, tech developed that would assist patients was the product of the data. For patients who agreed, some would also be permitted to see some of the products of the work related to their data. Im forgetting a lot of the data collection process because it was very rigorous and several years ago now, but everything above bar, no dark patterny ah-ha-gotcha! line buried in a 300 page liability sign off they had to agree to for some necessary life saving treatment or anything of that nature.
I even got to meet some of the people we helped which was a bit rewarding to see people's lives improve a bit with technology. The specific patient mentioned and their neurosurgeon even let me sit in on their brain surgery tumor removal (patient's suggestion), which was a very unique experience. So yea, they knew what was going on.
With that said, not all data usage was as transparent and ethical as what I worked with, and I saw a lot of mistakes there that make me cringe thinking what a less ethical business with no transparency might do, given the opportunity.