The term ‘clinical trial’ means many things to many people. For some, the thought of a clinical trial conjures up images of mad scientists and poorly-lit, back-room science experiments; for others, it evokes the impression of brightly lit laboratories with rows of test tubes, microscopes, and petri dishes; but for those who become all-too familiar in the most unwilling of ways, clinical trials are a beacon of hope – a single beam of sunshine miraculously finding its way into a dark room.
The National Institutes of Health define a clinical trial as, “A research study in which one or more human subjects are prospectively assigned to one or more interventions (which may include placebo or other control) to evaluate the effects of those interventions on health-related biomedical or behavioral outcomes.” And now we know why everyone is confused and has a different idea of exactly what participation in a clinical trial means!
Merriam-Webster defines a clinical trial as, “a scientifically controlled study of the safety and effectiveness of a therapeutic agent (such as a drug or vaccine) using consenting human subjects.” The categories include prevention, treatment, diagnosis or relief from a disease and illness. Still a lot of information for the average, non-medical expert to wrap the mind around, if you ask me.
My personal interest in clinical trials began with my career in philanthropy and my dedication to furthering cancer research. During my time with the American Cancer Society, I enjoyed the ability to read the science about a proposed or occurring study and translate the medical jargon into something that made sense and was inspirational to well-intentioned donors and supporters. And then my son was diagnosed with cancer. No longer was the medical jargon I read just inspirational, it was essential and, more importantly, it was obligatory.
In the last 15 years, my analysis and understanding of clinical trials has grown in ways I could never imagined. I am not alone. The tribulations of a childhood cancer diagnosis put to test and put on trial everything held dear. Often, the burden of discovery feels like the weight of the world and the life of a child rest only on a wish, a hope, and a prayer for a new therapy to become available or a clinical trial to open in time; for that one tiny beam light to find the crack in a nearly-closed door.
Every clinical trial, every therapy or drug, every opportunity for something new represents one thing: hope. There is no value, no measurement, and no outcome that can possibly measure the impact of this human emotion. Hope is as unique and individual as each and every precious life. One little ray of sunshine, no matter what scientific form it may come in, will light up the lives of those fighting and ignite a fire of possibility for the future.
‘Tryal’ is an obsolete spelling of what we now know as trial. I would argue we should go back to this old spelling because what clinical trials represent is an opportunity to . . . try. Even when clinical trials don’t provide the cure or most-desired result, they still represent an extra chance and an extra opportunity to, as we used to say, “kick the can a little further down the road.” I loved playing kick the can as a kid; as a parent, I simply tried to give my kid the chance to play. Jack was enrolled on nearly 20 different clinical trials during his seven years of fighting cancer. He embraced each one with his trademark smile, happiness, and belief in hope.
Though, in the long run, none of the trials were our needed golden ticket to a cure, Jack lives on in the science and in the collective knowledge of a community working to ensure hope exists and better outcomes will be discovered. I have no doubt Jack continues to smile, believe, and represent a ray of sunshine for others battling now and in the future. And there is absolutely nothing clinical about that.