At which point of transformation does data collected during care cease to belong to the patient?
This is a major ethics question we need to get a clear ruling on, because it’s the data that makes everything work.
We asked the question of the LinkedIn Health Infomatics Technology Group.
Mitchell Portnoy was kind enough to offer his perspective:
“The moment that 1) the patient identifier is scrambled, and/or 2) the patient’s data is aggregrated to a point where it would be impossible to discern an individual experience. In the case of aggregating patients data from North Dakota, for example, where only one individual suffered from a specific diagnosis, it would then be necessary to aggregate the data to a point where other patients with a specific diagnosis were included.
This comes from actual experience”