Academic Articles about Research Advocacy

• Patient Engagement in Cancer Research from the Patient Perspective Patricia A. Spears (Future Oncology)
• Patient Advocates and Researchers as Partners in Cancer Research: A Winning Combination.
  Porter LD, Goodman KA, Mailman J, Garrett WS.ASCO Education Book. 2023.
• Advocate involvement in Clinical Trials: Lessons from the Patient-Centric
  I-SPY2 Breast Cancer Trial Jane Perlmutter, Susie Brain et al. (European Society of Medicine Archives).2023.
• 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 Jeannine M. Salamone, Wanda Lucas, Shelley B. Brundage, Jamie N. Holloway, Sherri M. Stahl, Nora E. Carbine, Margery London, NaomiGreenwood, Rosa Goyes, Deborah Charles Chisholm, Erin Price, Roberta Carlin, Susan Winarsky, Kirsten B. Baker, Julia Maues and Ayesha N. Shajahan-Haq (Cancer Research)
• How have patient advocates in the United States benefited cancer research? 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

On-Line Training Resources about Cancer Research Advocacy

• RAN – Research Advocacy Network and the Advocate Institute
• Cancer Information and Support Network (CISN)
• Patient Advocacy Resource Guide (SWOG)
• Progress for Patients (Friends of Cancer Research)
• 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)

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)

• Research Fundamentals: Preparing You to Successfully Contribute to Research (PCORI)
• 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)

Timelines of 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)