A common complaint I hear from patient advocacy groups has to do with the lack of follow-up with patients after the conclusion of a trial. Patients often never hear back from the company conducting the study or learn of the results. Some companies have struggled to find a solution, while others have started providing data to patients at the end of the study. Janssen has taken that notion to the next level: It is attempting to make patient data available to participants while the trial is underway.
When first considering this change, Andreas Koester, MD, Ph.D., global head, R&D operations innovation at Janssen, notes his team had a lot of questions. First, they wondered why no one else was doing it. That got them wondering about the rationale behind doing it, and if the action would be valuable to patients.