The bridge connecting the cancer patient’s perspective and research science.
The Cancer Research Advocacy Group (CRAG) provides a vital perspective in the fight against cancer, offering input into fundamental research, clinical trials, outreach, and education and sharing information with cancer survivors, researchers, and clinicians. This work creates bench-to-bedside, bedside-to-bench feedback and means that patient perspectives are at the heart of everything we do.
CRAG members include a diverse group of cancer survivors and individuals with a strong personal connection to cancer. Members may receive formal training and attend seminars given by Cancer Center at Illinois members, speak to the future generation of cancer researchers, provide researchers with letters of support for grant applications, and lobby foundations for funding support to continue cancer research.
“We’re a group of cancer survivors and caregivers that want to have a voice at the table about human experience. We provide diversity and further collaboration to research.”
– Sarah Adams, CRAG member and breast cancer survivor
Bringing the Patients’ Voice to Cancer Research
We advocate the human perspective to researchers, clinicians, and the community to positively impact both experiences and outcomes for cancer patients, survivors, and caregivers.
Caring and empathy
Caring and empathy for those touched by cancer is foremost in all we do.
Using communication to build a bridge between advocates and the various constituents they serve.
Grow diversity among our members, focus on all types of cancer and research.
Always trust each other and act honestly.
Teamwork and Collaboration
We listen to others, respect opinions, and participate in consensus decision making.
The long-term goals of CRAG are to promote innovative, evidence-based, patient-centered, translational research, through the inclusion of cancer advocates. CRAG fosters and expands opportunities for advocates in the UIUC research community and beyond.
CRAG encourages participation from the following groups:
CRAG was initiated in 2015 by Zeynep Madak-Erdogan and Erik Nelson, who were individually working with cancer research advocates Jody Shoeger, Jamie Holloway, and Sarah Adams. When the researchers were introduced to each other by current Cancer Center at Illinois Director, Rohit Bhargava, Madak-Erdogan and Nelson founded CRAG to encourage other researchers to incorporate the patient’s voice into cancer research.
A thoroughly parallel and collaborative effort between research scientists and advocates, the small group began to gather more survivors through Carle Health and the American Cancer Society, and several Illinois faculty members. The group organized regular meetings to discuss cancer advocacy and its ability to forward research, as well as to provide initial training on cancer biology.
CRAG is now a diverse and talented group of 15 local members who work with Illinois faculty to provide the patient perspective. With CRAG’s support, Madak-Erdogan is studying health disparities in cancer and Nelson recently received the prestigious Era of Hope award for breast cancer research.
How to Get Involved
CRAG members meet monthly to discuss projects and training opportunities. Volunteering is project-based and is very flexible, fitting easily into busy schedules. CRAG accepts all individuals who are passionate about establishing relationships with cancer clinicians, patients, and researchers.
Cancer Advocates Defined
Individuals who have been diagnosed with cancer or have a strong personal connection to cancer
Represent and share the collective cancer patient/survivor perspective (i.e., insights and experiences of cancer survivors)
Interact with researchers to help inform meaningful, patient-centric research with the greatest impact for patients
Advocate for research funding and cancer awareness
Cancer Advocate Training
An informed advocate can greatly impact the direction of research. Below is a list of groups that offer specific training for advocates:
- Project LEAD (National Breast Cancer Coalition)
- AACR Scientist-Survivor Program
- ASCO Advocacy
- Susan G. Komen
- NIH Human Subjects Training
Several of these opportunities offer scholarships that cover the cost of travel and training.
Cancer Advocate Roles
- Ensure research is patient-centered: “for patients, with patients”
- Ensure research is innovative, evidence-based, and accessible
- Review and contribute to papers, abstracts and grant proposals (Patient Impact, Lay Summary, Lay Abstract)
- Attend coordination meetings, conferences, seminars, and presentations
- Represent the University of Illinois Urbana-Champaign in cancer functions, media events, and interviews
- Spread the word about Illinois research.
- Highlight bench-to-bedside research (blogs, meetings, social media, through direct interactions with other patients, survivors, and advocates)
- Serve on review panels for DOD, Komen, ACS and attend advisory panels for ASCO, etc.
- Provide a letter of support for grant applications, outlining their role in the process of research program development
- Suggest patient recruitment strategies for clinical trials
- Provide a patient perspective, especially considering quality of life issues, early in study design
- Meet with similar local and national advocacy groups
“I owe CRAG everything for the knowledge. Without CRAG, [I wouldn’t have been able to participate] in project LEAD, the San Antonio Breast Cancer Symposium, and the Department of Defense Breast Cancer research grant peer review. CRAG members are always looking to “pass the port” to new members.”
“The most rewarding experience is building those relationships and being a part of a group of such diverse talent. Cancer research is so important because there are so many cancer fatalities and such trauma to the families. Researchers are working so hard to not only cure but come up with better options and save more lives.”