We often hear in the press about clinical trials being conducted in relation to various diseases, medical devices or treatment protocols. What exactly are clinical trials and how can we, as patient advocates, have a participatory role?
Breakthrough scientific research can only become integrated into the standard of care if it is evidence-based, if it has been thoroughly tested using evidence from well-designed studies over time. These studies often take the form of clinical trials that explore whether a given procedure or medication is safe and effective for humans. No matter what is being tested, the ultimate goal of scientific research in any field is to make sure that any carefully proven outcome enhances the patient’s life. Who better to fight for a patient’s safety and quality of life than a patient advocate who has already experienced the disease in question?
How can we become an integral part of this search for medical breakthroughs? An increasing number of scientific funding organizations now require the presence of advocates on any new medical research process in order for these programs to receive grants. Another role for patient advocates is to serve on peer review boards, helping to evaluate the quality of research in scholarly articles intended for publication. There is a growing perception that science must no longer exist in an ivory tower, unconnected from those it is intending to help. A patient advocate’s role is to serve as a constant reminder that trial participants are human beings with fears and concerns regarding possible side effects, helplessness, depression and mortality, not just guinea pigs to be analyzed.
Scientific training for advocates is essential in order to be able to communicate with both researchers and trial participants, employing understandable concepts and language specific to each group. Many courses teaching the basics of cancer research exist through both classroom or online modules. For example, the National Breast Cancer Coalition’s annual Project LEAD® engages top level scientists, professors and policy makers to instruct advocates about the biology of breast cancer as well as how to create an effective advocate-researcher collaboration. Researchers have typically seen patient advocates as somewhat of a necessary evil. The better informed we are about current scientific research, the more we can prove our value as allies in the fight against cancer.