Years ago I was asked to enroll my daughter in medical research. As I recall, the University of Buffalo physician approached me shortly before my child was to undergo a procedure. They were hoping to take a few additional tissue samples that wouldn’t lengthen the procedure nor harm my daughter. I said no to this request. The clinician proceeded to provide some additional information (verbally), which came across as an effort to persuade me to reconsider. I declined again. He then said, “May I ask why you don’t want to help advance medical research?” (Take a deep breath, Rob, as this doctor will be soon conducting a surgical procedure on your child). “Of course,” I replied. However, I opted not to go into a lot of detail in my reply of, “I am simply not interested in signing my daughter up for research at this particular time.”
Perhaps this last-minute approach by the doctor normally elicited a high acceptance rate. I imagine many parents are busy wringing their hands in worry, and probably don’t put much thought into what seems like a rather simple and innocent request. Now to be sure, I was a little worried about my child. But having undergone the same rather routine procedure multiple times myself, I wasn’t overly concerned. In fact, it was this experience which led my wife and I to mutually decide that only one of us should take off work to accompany our daughter on this day, and that one of us should be me. That’s actually one reason why I said no to the last-minute research proposal; I didn’t want to sign up my child without having the opportunity to discuss the decision with my spouse. Another reason why I said no was that my daughter was not in the room at the time of the request, but in the final phases of being prepped for surgery. While I doubt she would have fully understood the details of what was being asked, at least had she been present she would have felt included in the discussion and decision, instead of finding out after the fact that a choice had been made on her behalf. Sorry, despite my desire and willingness to help advance medical research, my wife and I are not interested in: (A) raising a person who isn’t provided the opportunity to question authority and seek understanding; and (B) making unilateral decisions on behalf of our children without consulting each other, except in emergency situations.
We all know that the fuel of the biopharmaceutical R&D engine is clinical trials. If we want future cures and therapies for that which ails us, patients need the biopharmaceutical industry. Conversely, the biopharmaceutical industry needs people as willing and collaborative clinical trial participants, not mere subjects of study. In this month’s issue you will find “A Behind-The-Scenes Look At The Patient Clinical Trial Experience”, which features the firsthand experiences of three research participants, including one parent who agreed to include her newborn child in a research study. We are thankful to all three for their willingness to transparently share their experiences, as well as for the people and organizations that helped us to connect. Though we continue to talk about our industry becoming patient-centric, especially when it comes to clinical trials, it seems we have a long way to go. Encouraging greater medical research participation isn’t just what, when, where, why, and how you ask, but how you treat people throughout their disease journey.