Opportunities and Resources for Cancer Research Advocates
Opportunities
For all or multiple cancers
- Scientist – Survivor Program (American Association for Cancer Research)
- Patient Advocacy Program at the ASCO Annual Meeting
- Congressionally Directed Medical Research Programs
- GRASP: Guiding Researchers and Advocates to Scientific Partnerships
- Research Advocacy at NCI
- NCI Office of Advocacy Relations (National Cancer Institute)
- Physical Sciences Oncology Program (National Cancer Institute)
- FORCE Research Advocate Program (Hereditary Cancers) FORCE – Facing Our Risk of Cancer Empowered
- Stand Up to Cancer
- Patient Engagement at the US Food and Drug Administration
For specific cancers
- Project LEAD (National Breast Cancer Coalition)
- Alamo Breast Cancer Symposium Advocate Program
- Susan G. Komen Advocates in Science (breast cancer)
- Young Survival Coalition (breast cancer in young women)
- Theresa’s Research Foundation (Metastatic Breast Cancer)
- Lobular Breast Cancer Alliance
- Ovarian Cancer Research Alliance
- Fight Colorectal Cancers
- STARS (International Association for the Study of Lung Cancer)
- Cholangiocarcinoma Foundation
Programs associated with specific hospitals
- Dana Farber/Harvard Cancer Center Breast Cancer Advocate Program
- Georgetown Breast Cancer Advocates
- Cancer Research Advocacy Group (Cancer Center at Illinois Urbana-Champaign)
- Community Scientist Program (MD Anderson Cancer Center)
- Huntsman Breast and Gynecologic Cancer Research Advocates
- Johns Hopkins Breast Cancer Research Advocates
- Karamos Cancer Advocacy Program
- Breast & Gynecologic Cancers Research Advocate Committee (Huntsman Cancer Institute)
- Cancer Community Partnership (National Cancer Institute)
- PIVOT – Patient and Investigator Voices Organizing Together (University of Kansas Cancer Center)
- University of North Carolina Lineberger Comprehensive Cancer Center
- Oregon Health and Science University Knight Cancer Center Research Advocates
- Breast Cancer Research Advocacy Network (University of Pittsburgh Hillman Cancer Center)
- UCSF Breast Science Advocacy Core
- University of Illinois at Chicago Cancer Center (Email sasep@uic.edu for more information)
- Vanderbilt-Ingram Cancer Center
- Breast Cancer Research Advocacy Network (University of Wisconsin)
Training Resources about Cancer Research Advocacy
- Definition of a research advocate (National Cancer Institute)
- RAN – Research Advocacy Network and the Advocate Institute
- Cancer Information and Support Network (CISN)
- Patient Advocacy Resource Guide (SWOG)
- Framework for Patient Engagement in Cancer Network Group Studies Five self-paced training modules, focused on engaging advocates in clinical trials. SWOG Cancer Research Network (SWOG)
- Improving Diversity and Representativeness of Clinical Trial Participants (SWOG)
- Patient Involvement Toolkit for Researchers (Cancer Research UK)
- Friends of Cancer Research
Resources Related to Translational Research and Industry
- Toolkit for Patient-Focused Therapy Development (National Center for Advancing Translational Science)
Training Resources about Patient Engagement (Not Specific to Cancer)
- The Patients Professors Academy (U. of Maryand School of Pharmacy)
- Citizen Science Curriculum (University of Florida)
- Patient-Centered Outcomes Research Institute (PCORI)
- Cochrane Consumer Network
- Rising Tide Foundation: Patient Engagement in Research
- Patient-Led Research Scorecards (A PCORI-funded project)
Popular Articles about Research Advocacy
- How Patient Advocates Help Cancer Research
A video interview with Patty Spears (Cancer.Net) - The Evolving Role of Patient Advocacy
Marci Landsmann (Cancer Today, AACR) - So you want to serve on a scientific review panel?
Bob Riter, Monica Vakiner, and Carole Baas (Cancer Today, AACR) - Advice from Advocates: How to Navigate the Annual Meeting
Bob Riter and Carole Baas (Cancer Today, AACR)
Academic Articles about Research Advocacy
- Patient Engagement in Cancer Research from the Patient Perspective
Patricia A. Spears (Future Oncology) - Cancer Research Advocacy: Past, Present and Future
Jane Perlmutter, Shannan K. Bell, and Gwen Darian (Cancer Research) - The Current Landscape of Research Advocacy and Education for Patients with Colorectal Cancer
Reese M. Garcia, Andrea J. Dwyer, Sharyn Worrall, Keavy McAbee, Anjelica Q. Davis (Lower Gastrointestinal Cancers) - Transforming research: engaging patient advocates at all stages of cancer research
AnneMarie Ciccarella, Alicia C. Staley, and Aime T. Franco (Annals of Translational Medicine) - Patient Advocacy in Research: Merely an Afterthought?
Musa Mayer (The Patient: Patient-Centered Outcomes Research) - Promoting Scientist–Advocate Collaborations in Cancer Research: Why and How
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Deborah Collyar, (Nature Reviews Cancer) - Connecting Students with Patients and Survivors to Enhance Cancer Research Training
Robert Riter and Robert Weiss (Cancer Research) - Improving the Odds Together: a framework for breast cancer research scientists to include patient advocates in their research
Hillary Stires, Igor Bado, Thelma Brown, et al. npj Breast Cancer - Roadmap to engagement: Bringing patient partners into cancer research and beyond
Kimminau, K., Jernigan, C., Krebill, H., Douglas, S., Peltzer, J., Hamilton-Reeves, J., . . . Jensen, R. (2023). Journal of Clinical and Translational Science, 7(1), E178
Presentations about Research Advocacy
- Advocacy: The Patient Voice in Cancer Research
A presentation by Carole Baas to Community-based cancer research presentations and discussions (BIOMS 5665) at Cornell University - Cancer Research Advocacy
A presentation by Jane Perlmutter to the Bladder Cancer Advocacy Network - Connecting Researchers and Patients: Practical First Steps
A presentation by Bob Riter to the 3rd Novel Methodologies in Health Disparities Research Symposium
Background and Context for Understanding Cancer Research
- Landmarks in Cancer Research (AACR)
- Milestones in Cancer Research and Discovery (NCI)
- Cancer Progress Timeline (ASCO)
- A history of cancer therapy (Scientific America and Memorial Sloan Kettering Cancer Center)
- The history of cancer (American Cancer Society)
- Timeline of cancer treatment development (Wikipedia)
Please send suggestions for additional resources to Bob Riter at RNR45@cornell.edu.