Privacy and regulatory compliance with patient related lost to follow up data, even the extremely limited lost to follow up data we require, is the most important element of what we do. We understand our role in the LTFU patient search process and the need for our standards of conduct to be in line with each specific project we are assigned. In fact, professional investigator licensing laws include compliance language equivalent to the confidentiality of a doctor or attorney.
In many cases, we do not need to receive any medical lost to follow up data.
Something important to understand is that in most cases, it is not necessary for us to obtain any medical information on the subjects of the study. Only when the objective includes initial patient contact in order to determine viability of compliance is such information necessary. If the research engagement does not include initial contact to determine if a patient wants to opt-in, there is no need for us to obtain any medical information from you or the patients themselves. If this is the desired avenue, the process itself will not leave any footprint behind and neither the patients, nor any other third parties are ever aware that a search was conducted. This is the most common and preferred solution as there is no medical information being transacted whatsoever, therefore HIPAA does not apply.