Many in the field of biomedical research have called for increased interaction between scientists and patients as a means of informing scientific research. I’ve recently had several opportunities to experience the benefits of interacting directly with patients suffering from peripheral neuropathy, the condition I study.
As strange as it may sound, despite the fact that I’ve been studying peripheral neuropathy for three years, I had never spoken with patients before. As a research scientist, I work with animal models such as the zebrafish and the mouse. Though I’ve discovered two potential drug therapies for Taxol-induced peripheral neuropathy that I hope will ultimately be tested in humans, I am still far removed from the clinic. For me, these interactions have been incredibly valuable.
I study peripheral neuropathy induced by cancer chemotherapy, which causes pain, tingling and numbness in the hands and feet. My research has demonstrated that chemotherapy-induced peripheral neuropathy is linked with an increase in an enzyme that degrades the collagen, or “glue,” between the cells of the skin. The increase in this enzyme causes the skin on the hands and feet to be damaged, which in turn contributes to nerve degeneration. When I searched the medical literature for references to skin damage due to Taxol treatment I found nothing, but all of the patients with whom I spoke described these symptoms. My conversations with patients have been enormously reassuring because they confirm that my findings in zebrafish are directly relevant to the patient experience.
But the benefits of my interactions with patients go beyond the confirmation of my research findings. My personal conversations with patients have also reinforced the tremendous need for my research. When the news of my findings was released, the volume of calls and emails I received from patients desperate for a cure led me to suspect that the incidence might be much higher than previously reported. The head of a patient advocacy group with whom I recently met confirmed my suspicions. He said the group had documented the U.S. incidence to be 20 million — far more than was believed — and that it could be as much as twice that. My interactions with patients have also allowed me to learn more about how peripheral neuropathy affects quality of life. I had read about the disabling symptoms, but reading descriptions in a medical text is a different matter from listening to patients talk about how their ability to execute the simplest tasks is affected by this painful condition.
The path from laboratory to clinic can be long and hard. In the face of the challenges posed by moving a drug through the development process, it’s easy for researchers to lose sight of the goal — helping patients. Interactions with patients remind us of why we do what we do. We need patients to inform our research, to reconnect with the need for new therapies and to stiffen our resolve in the face of discouragement. We need to remember that the diseases we study aren’t just images under a microscope lens, but painful conditions for which our work may be the only potential solution.