Voices on Cancer is a Lineagotica Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Sanford Jeames, DHA, is a research advocate and patient advocate. He serves on the University of Texas Southwestern Kidney Cancer SPORE Patient Advocacy Council, the National Cancer Institute’s (NCI) Cancer Care Delivery Research Steering Committee, and the NCI Patient Advocate Steering Committee. He also reviews cancer concepts and protocols for the ECOG-ACRIN Cancer Research Group and is a manuscript editor and reviewer for the Urologic Nursing Journal and the Journal of Health Care for the Poor and Underserved. He helps facilitate cancer support groups as part of the US TOO International Support Group council and is an advocate with the LIVESTRONG Foundation.
My path to advocacy
My dual role as a research advocate and patient advocate wasn’t one I sought, but an opportunity that found me. After my college football career ended, I needed financial assistance to complete my bachelor’s degree and saw military service as a possible option. A family member convinced me to pursue a health-related career instead because there were more job opportunities after I completed my service. Little did I know that this advice would result in a career advocating for the many people who have been—and will be—diagnosed with cancer.
I began working as a surgical assistant in the U.S. Army and was honorably discharged following Operation Desert Storm/Desert Shield. I found that I enjoyed learning anatomy and physiology, and I continued to work in hospital settings. That’s when I began noticing significant disparities in certain health conditions of the patients who were being seen. One of the more noticeable aspects was that many health care workers didn’t understand or comprehend what being diagnosed with cancer actually meant to patients.
As I completed my Master’s program, doctors associated with the University of Alabama at Birmingham (UAB) Comprehensive Cancer Center asked me to serve as Patient Education Coordinator and Clinic Coordinator for its Prostate Center, and my advocacy journey began. I participated in the NCI’s Consumer Advocates in Research and Related Activities program. I was then appointed to serve as a patient advocate and protocol reviewer for the NCI’s Adult Central Institutional Review Board, which reviews research grants.
Today, a significant part of my advocacy activities involve collaboration with community-based groups and state agencies. Through my participation in national meetings and review panels, I’m able to share information with researchers about how cancer impacts patients and their communities culturally.
Another focus of my advocacy work is to bring attention to health disparities and the impact of chronic conditions on people of color, especially African American men. African Americans continue to experience significant differences in cancer mortality when compared to other ethnicities. I’ve been able to design, implement, and integrate cancer prevention activities within African American communities. These interventions have helped researchers better understand the impact of lifestyle on cancer in these communities.
The role of a research advocate
More cancer research advocates are needed. The NCI’s Office of Advocacy Relations relies on them to "bring a human face to cancer research that reinforces the need to accelerate progress.” These advocates help bridge gaps that exist between research and the cancer community at large. They’re able to broaden the vision of clinicians and scientists by helping researchers ensure that their research outcomes are focused on patients.
Within the NCI, advocates with more than 2 years of involvement in cancer research-related activities are able to help:
Develop recommendations and provide advice on strategic directions or broad policy issues
Assist in research design
Review scientific proposals
Help disseminate NCI findings and ongoing activities
Learn more about the criteria for becoming an NCI research advocate.
The role of a patient advocate
You don’t have to have research experience to be an advocate for people with cancer. One of the more important roles patient advocates provide is to act as a liaison between patients and the research communities and clinicians who treat the millions of Americans diagnosed with cancer each year. Clinicians and researchers fully grasp the diagnosis of cancer in its scientific setting. Patient advocates bring a non-scientific viewpoint to the research process and communicate the patient perspective.
Patient advocates also wear a number of other hats in the health care system. They may choose to:
Fill support roles for newly diagnosed patients
Act as liaisons between clinicians and family members
Engage in fundraising activities for cancer research
Serve on grant review panels
Educate their local communities about the latest treatments
Provide resources, such as transportation to treatment centers
Moderate social media sessions
Raise awareness of cancer events and advancements
There are organizations that provide training for people to become patient advocates as well as to bring more patient-centered perspectives to the research process.
Your perspective matters
Nearly 1.7 million Americans will be diagnosed with cancer this year, according to the American Cancer Society. There is often confusion and fear associated with a cancer diagnosis, and the services that research advocates and patient advocates provide are much needed.
My journey as both a research advocate and patient advocate has enabled me to provide different viewpoints on the research process as well as to the communities in which I reside. You too can become a key representative within the cancer research process and continue to provide important perspectives to improve cancer diagnoses, treatments, and quality of life after treatment.