“What do you do for a living?,” my hair stylist asked. “I work for a patient recruitment company. We recruit patients who are eligible to participate in clinical trials,” I answered. “So – you find the guinea pigs?,” she replied. I was left speechless.
This encounter made me realize that much needs to be done to improve the public’s perception of clinical research. Randomized clinical trials provide valid assessments of the safety and efficacy of treatments, diagnostics, and preventive therapies. Trial results can revolutionize current treatments for the most widespread chronic diseases and conditions and for the rarest of diseases. They also play an important role in the development of preventive care and vaccines.
Yet a major obstacle to clinical research is the low numbers of individuals who enroll due to negative public perceptions about clinical research. The healthcare research industry and the general public could work together to dispel the notion of “guinea pig” and replace it with the notion of “contributor to the world’s health.” Below are some approaches that could help this initiative.
Teaching basic medical vocabulary and the principles of clinical research in high schools could result in better understanding of clinical trials. This could translate to greater participation for the students themselves as they enter young adulthood as well as for their parents as they age.
Improved Public Awareness through Advocacy Groups
Advocacy groups have played an important role in promoting involvement in research for a variety of diseases. The National Foundation for Infantile Paralysis pioneered public support for clinical research after World War II through the March of Dimes. This tradition continues with the “Love/Avon Army of Women” which enlists participants in breast cancer trials in collaboration with the American Association for Cancer Research and the National Breast Cancer Coalition. Many disease-specific organizations are successfully bringing awareness of clinical research by connecting with patients who suffer from a variety of diseases such as arthritis, cancer, and diabetes.
Public Health Service Messages
Educating individuals about clinical trials can improve perceptions about research studies and might increase their willingness to enroll or tell friends or family members about an appropriate trial. These messages could stress that modern safeguards have been implemented to protect participants.
Improve Study Volunteer Experiences with Effective Communication
The study coordinator plays a vital role in how a patient views their clinical research experience. Patients want to be told of the benefits and risks. They want to know the relevance of the study to themselves and they want to be treated with empathy. They also want to know that their privacy and confidentiality are being protected. Perhaps they could be given a pin to signify their involvement creating a sense of pride which might lead them to recommend clinical trials to others.
Everyone Can Do their Part
Many of today’s most effective prevention and treatment methods were tested and proven in clinical trials and are now accepted as the standard of care. We are all fortunate to have these treatments and therapies. We can all do our part to change the negative perceptions of clinical research.
The next time my hairstylist or anyone else speaks negatively about clinical research, I will respond by saying, “No, we do not recruit guinea pigs. We recruit contributors to the world’s health.”