Clinical trials with long-term follow-up stages provide significant estimates of the effect of a drug in a specific population, as well as data about its safety and efficacy. In fact, for hard targets such as cancer treatments, these studies are essential to deliver substantial statistical results, which could lead to increasing patient survival time and quality of life.

As CDMs our primary objective is to provide high-quality data to our sponsors, meaning that it is accurate, reliable and complete. This has become easier by using software applications to review discrepancies and reconcile them, while keeping an audit trail of the records in the databases. However, there can be difficulties reaching goals, due to the number of patients lost to follow-up and lack of protocol adherence following investigational product administration. To increase their patient retention rate, many trials do not specify within their protocols when exactly a subject is officially considered ‘lost to follow-up’. Therefore, the number of subjects enrolled, to which there is no survival or death awareness, grows considerably leading to a potential risk in data quality.

Fortunately, with social media it is becoming easier to get information about the status of subjects. At the moment, over 40% of the World population is consider an active social media user, and by year 2025 this number is expected to be over 45%, accordingly to different sources. This means more resources to find people worldwide and to be aware of what they do and where they are. As still so recent, there is still a gap between social media data, ethics and privacy in terms of a clinical trial. Which is the limit, if any, to locate a subject that is in long-term follow-up and currently not showing up to in-site visits or getting investigator’s phone calls? Is it acceptable to document someone’s well-being by a Facebook picture or a Twitter post? How appropriate is it for a clinical trial to not specify a period in which a patient is ‘lost to follow-up’? How reliable would this data be, as we don’t know for sure who is in the other side of the screen?

For the upcoming years, it would be interesting for the Industry to set multi-disciplinary discussions about the resources available for patient tracking and their impact in data privacy. A review of current regulations should also be addressed for the success of future studies.