At ICAN, we are very interested in the issue of educating principal investigators and study teams to make sure that the PI’s interactions with potential clinical trials patients are characterized by a level of communication that answers all the questions of the patient and their families. Not only is this the key to recruitment, but it is the essence of patient retention once the patient enters the clinical trial.
We also find that some patients are not willing, and understandably so, to be poked and prodded and beholden to an unreasonably high number of clinic visits or travel to a very distant trial site. The whole prospect of entering the trial then becomes a heavy psychological burden, and it is hard for the patient and his family to contemplate remaining in the trial under those onerous circumstances. Additionally, many trial participants have travel costs and dislocation worries even if the trial drug, special testing, and additional physician visits are paid for, routine patient care costs are covered, and free flights and hotel accommodations are provided or arranged for—or their costs defrayed—near the trial site. It is physically stressful for a Stage IV patient to be “on the road” traveling thousands of miles away to a clinical trial in some instances. It is very sad when a patient, who is doing well in a clinical trial but can no longer tolerate the wear and tear of frequent cross-country flights, decides to withdraw from the trial.
For some of our patients who have limited options remaining in the standard arsenal, they worry that clinical trial participation is a big gamble. Some of these patients would like to know, prior to entering a trial, how well the trial is doing and if patients in the trial are getting benefits from the trial drug or intervention. At ICAN, we make sure that the patient understands that the clinical trial’s study team cannot possibly disclose such information. While this is frustrating for some patients, they come to understand quickly what the clinical trials process involves and what the ethical standards of clinical research entail.
