Cancer Research Advocacy Group
Connecting the Patient Perspective & Research
The Cancer Research Advocacy Group (CRAG) provides a vital perspective in the fight against cancer, offering input into fundamental research, clinical trials, outreach, education, and sharing information with cancer survivors, researchers, and clinicians. This work creates bench-to-bedside and bedside-to-bench feedback, putting patient perspectives at the heart of everything our researchers do. CRAG members include a diverse group of cancer survivors and individuals with a strong personal connection to cancer.
Mission, Vision, Goals, and Values
Advocate the human perspective to researchers, clinicians, and the community to positively impact both experiences and outcomes for cancer patients, survivors, and caregivers.
To bring the patient’s voice to cancer research.
To bring the patient’s voice to cancer research.
- Caring and Empathy: Caring and empathy for those touched by cancer is foremost in all we do.
- Communication: Use communication to build bridges between advocates and the various constituents they serve.
- Diversity: Grow diversity among our members, focusing on all types of cancer and research.
- Integrity: Always trust each other and act honestly.
- Teamwork and Collaboration: We listen to others, respect opinions, and participate in consensus decision making.
Who Are CRAG Members and What Do They Do?
CRAG members are Individuals who have been diagnosed with cancer or have a strong personal connection to cancer. They 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, and advocate for research funding and cancer awareness
- 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
- 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.
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.
Susan Leggett joined as a co-faculty leader of the group in 2023. Her research integrates live-cell imaging, bioengineering, and machine learning to explore cell behaviors that drive cancer progression.
How to Get Involved
CRAG encourages participation from the following groups: cancer advocates, community representatives, and researchers. 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 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)
- ASCO Advocacy
- Susan G. Komen
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, and ACS; 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