Staying Connected After The Clinical Trial 6

Photo from Unsplash. By Elisabetta Foco

Photo from Unsplash. By Elisabetta Foco

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?


Questions to Ask Your Doctor About Clinical Trials 1

International Clinical Trials Day, Ok to Ask

Staff at the University of Leeds Clinical Trials Research Unit (UK) celebrate International Clinical Day in 2013. |

Through our research on the recently released Preferences and Perceptions in Clinical Research infographic, we learned that while 52 percent of patients would prefer to get information about clinical trials from their primary physician, only 20 percent actually do.

Whether you find out about clinical trials through a healthcare provider or on your own through Internet sleuthing, it’s important to talk to your primary care physician or specialist before making the final decision to join a trial. On their website, the Alzheimer’s Association points out that your doctor might be uniquely qualified to give advice on whether participating in a clinical trial might be right for you, since he or she knows both you and your condition. They can also help you collect all the specific details about your health—clinical diagnosis, tests used to make the diagnosis, current and past treatments, etc.—that will help you more easily find a clinical trial that matches your particular situation.