Each year, thousands of people participate in clinical trials. Much of our recent focus has been on patients enrolling into trials, and what happens once they’re in. But, what about what happens after trial? Patients and caregivers I’ve talked to have indicated that a lot more can be done to let them know that they are appreciated, and to connect them to the larger story of the treatments they are helping to bring into the world.
Data from CISCRP seems to support the anecdotes I’m hearing. They cite a 2008 survey (Getz. The Monitor. September 2008: 17-21.) in which most trial participants said they felt they were “no longer valued” by researchers. This is a shame. Advancements in drug development would not be possible without these volunteers. None of them should leave a study feeling unappreciated.
In fact, leaving them feeling this way can have further consequences. A different survey said that “most study volunteers choose not to advocate clinical research among patients who are considering participation.” There could be any number of reasons for this, of course, but leaving them feeling abandoned after the trial ends certainly doesn’t help. Actually, I would argue that delivering a great experience is the best way to boost enrollment in the future.
So, what can be done?