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Public Policy of the Brain Injury Network
Policy approved by the Board 9-12-09
Patient Data Harvesting:
We object to the aggressive recruitment of patient volunteers online by entities that do not disclosure who they really are and their intention to utilize social media participant data for a potential “research volunteer” database. In other words, we object to undisclosed “patient data harvesting”. Every web site should have a privacy policy that discloses whether or not users’ private, confidential information is being stored, sold, researched or shared for research, advertising revenue, patient data harvesting, surveillance or other purposes.
We object to aggressive patient data harvesting online which lends itself to exposing private, confidential information about survivors to the public. We especially object to the operation of so-called consumer or survivor sites created as a way to attract people to a patient data harvesting business. We wish that gold standard level researchers would find a less covert way of attracting people into their studies. Potential study participants should not be treated as though they are some kind of marketable commodity.