PUTTING PATIENTS FIRST: A PERSONAL JOURNEY TO ETHICAL CLINICAL RESEARCH

In the late ’90s, I found myself thrown into the world of oncology and cancer research unexpectedly. My mother had been diagnosed with breast cancer, and I knew we had to find answers and treatment fast. As we went from appointment to appointment, traveling to leading cancer treatment facilities in the U.S. and searching for options, I learned something. The doctors and nurses who stood out to me were the ones who actually cared about my mom as a person. They thought about every potential option as if she were their mother. 

As we talked about potential research study participation, that was the first time it hit me—they were looking at how every piece of guidance they offered was going to impact her, me, our family, her quality of life, her overall recovery, and her life expectancy. That situation changed me forever. Over the last 20 years in clinical research, I have attempted to always put myself in the shoes of the patient, asking how every decision will impact their potential well-being, participation, or overall care. 

In clinical research, the primary objective is to discover new treatments, medications, and interventions that can improve patient health. However, while advancing scientific knowledge is essential, it is equally crucial that clinical trials prioritize the safety, well-being, and rights of participants. The ethical foundation of clinical trials is built upon the principle of always acting in the best interest of the clinical trial patient. This principle ensures that patients are treated with respect, care, and fairness. This means constantly asking, "Is this the best option for the patient?" 

Clinical trials often involve complex procedures, numerous visits to healthcare facilities, and the administration of experimental treatments. Patients may experience physical, emotional, financial, and psychological challenges throughout the process. It is crucial to offer comprehensive care and support throughout their participation. This care goes beyond addressing the medical aspects of the trial—it also involves offering travel and financial support. While patients are often willing to participate in clinical trials, their personal circumstances may limit their ability to do so. When thinking about what is best for the patient, this is critical. 

The ethical responsibility to always act in the best interest of the clinical trial patient is non-negotiable. The goal of any clinical trial should not only be to advance scientific knowledge but also to ensure the safety, dignity, and well-being of those who participate. Researchers, healthcare providers, and sponsors must maintain the highest standards of ethical conduct by prioritizing patient welfare throughout the research process. This commitment to patient care helps build trust in clinical trials, improves the quality of research, and ultimately leads to better outcomes for future patients. 

Unfortunately, my mother was not able to find effective treatment and lost her battle with cancer. However, she took comfort in knowing she participated in a study where research was collected to advance the treatment and future cure of breast cancer so that one day this would no longer be what takes loved ones away from their families. 

What is best for the patient... always. 

Scout is dedicated to advancing ethical clinical research while keeping patient care at the heart of everything we do. If you’re looking for tailored solutions or support in conducting compassionate, patient-centered clinical trials, contact us today to learn how we can help. 

Courtney Dodge joined Scout in March 2024 as Executive Director, Strategic Initiatives. She has over 20 years’ experience in the clinical research industry spanning CROs, biotech, and site networks. Click here to connect with Courtney on LinkedIn.