Patient Consent
A topic near and dear to me. I have been in 1,000's of discussions on patient data and the topic of "who the data belongs too". The patient of course. If a patient even signs a consent that says they are okay to share their data for research, why can't we begin to show patients how their data is being used to advance medicine? Why is it so hard for any patient to even access all of their data? Why is it not EASY to "Opt-Out" of such data sharing practices? Why can't a person choose which part of their medical information they want to share vs information they do not want to share? Most patients, in consenting situations are sick and just want to get well. They often do not even know what they are consenting too, let alone how to even get out of what they consented. I can only hope things are changing and soon we will be able to demonstrate the ultimate respect for the privacy of a patient and only transact against data that has been provisioned by the patient.
Image source: healthaffairs.org
