Many people personally affected by cancer want to give back and make cancer an easier experience for those that follow. One way to give back is becoming involved in the research process. Our “lived experience” with cancer can contribute to the training of scientists-in-training, in the development of clinical trials, and in deciding which research proposals should be prioritized for funding. These resources will give you a taste:

• 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)

Advocate 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
• Advocates for Collaborative Education
• GRASP: Guiding Researchers and Advocates to Scientific Partnerships
• Research Advocacy at the National Cancer Institute
• Progress for Patients (Friends of Cancer Research)
• 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
• Cervivor (Cervical Cancer)
• 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)
  • https://deainfo.nci.nih.gov/advisory/ncra/0622/Krebill.pdf
• 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
• The Bench with Bedside Initiative (USC Norris Comprehensive Cancer Center)
• 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)

Additional resources are listed here.

FAQ

Why should I become involved in advocacy and cancer research?

Patients and survivors become involved for a variety of reasons. At first, many want to learn more about their own cancers, but, over time, they want to learn about cancer more broadly. Those of us working with students and trainees generally want to give back by improving cancer care in the future. We want to nurture the next generation of researcher.

What are common ways that patients and survivors serve?

It is common for advocates to serve on research review panels such as the Congressionally Directed Medical Research Programs. It’s an opportunity to have input (and a vote) into which cancer research projects are funded. Others serve as consultants on specific research projects, raise funds for research, serve on hospital Institutional Review Boards, and in countless other ways. (See the extensive listing above).

Where do I start? Do I need training?

Cancer is remarkably complex and our understanding of it is constantly evolving, so training is essential to make you effective as well as comfortable. There are a few formalized training programs such as the Scientist-Survivor Program of the American Association for Cancer Research, and Project LEAD of the National Breast Cancer Coalition. There are also on-line modules available from the SWOG Cancer Research Network and from other organizations.

Is it possible to make a living as a full-time advocate?

It’s increasingly possible to be engaged in a variety of advocacy efforts at both a local and national basis. Unfortunately, most advocacy activities provide little or no compensation. This is gradually changing and the concept of “fair compensation” is increasingly discussed.