Advocacy Action — Participating as a Research Advocate
Here's how to represent patients in the research process
I remember my first experience as a cooperative group research advocate five years ago. I had been asked to serve on what’s known as a cooperative group site committee.
I quickly learned that a cooperative group refers to the Clinical Trials Cooperative Group Program of the National Cancer Institute (NCI). A dozen such groups work with more than 1,700 institutions to enroll more than 22,000 patients each year in clinical trials. “Site” refers to an organ part; I serve on a gastrointestinal site committee.
My first meeting was both exhilarating and terrifying. I was in a position to provide feedback that would shape cancer research questions, but I didn’t know how to proceed. I felt like I was standing in a fully stocked kitchen with no cookbook. So I asked my committee chair and other advocates for advice and slowly learned how to be an effective part of the process.
Below are a few tips I’ve gathered from my cooperative group colleagues over the years. Research advocates in venues such as institutional review boards, grant review and advisory committees, and data safety monitoring boards may also find them helpful.
1. Get involved. Research advocates bring the patient perspective to the research development process and support efforts to enroll patients in trials. The National Cancer Institute’s Consumer Advocates in Research and Related Activities (CARRA) program offers training and resources, as well as opportunities to get involved in many levels of the research process.
2. Represent your community. Research advocates represent our patient community, so a connection with groups of patients is important. Participation in e-mail lists or support groups broadens our perspective and helps us reflect on the actual needs and priorities of patients and their families. For example, one advocate told me that he reviewed the protocol for a clinical trial that would need multiple blood draws after chemotherapy. The advocate suggested to the cooperative group committee that the blood draws be combined with routine follow-up appointments to avoid additional patient visits.
3. Develop a job description. Research advocates work with their group to develop a clear role and well-defined responsibilities. Once we know what to do and how to do it, we are respected and productive members of the group. For example, one advocate told me that she respectfully, but insistently, countered a physician during a committee meeting. Later, the physician acknowledged the discomfort generated in their exchange but lauded her role by saying, “You did what you are here to do: Represent the interests of the patients. You did that well today.”
4. Do your homework. Research advocates take their jobs seriously. While we don’t need to understand all the science, we do need to understand what the science means to patients. One advocate I know spends at least a couple of hours examining each protocol and consent form for the clinical trials she reviews. This helps her understand what the participants are being asked to do and whether the study results will benefit future patients.
Nancy Roach is the president and chair of C3: Colorectal Cancer Coalition (www.fightcolorectalcancer.org).
FOR MORE INFORMATION:
NCI’s Clinical Trials Cooperative Group Program: www.cancer.gov/cancertopics/factsheet/NCI/clinical-trials-cooperative-group
NCI’s CARRA program: carra.cancer.gov