Resources for advocates
Because we require applicants and funded researchers to engage breast cancer or community advocates in their projects, we need advocates who can partner with scientists to ensure that the research is relevant to all of us concerned about breast cancer, including those with the disease, families, and caregivers, and that research findings are communicated back to the affected communities and put to use as soon as possible.
Are you interested in becoming an advocate for CBCRP-funded research projects? Are you are a resident of California, actively involved in a breast cancer or other organization or community; and able to represent the priorities, concerns, needs and views of your community?
For more information about what advocates do, see the Research Advocacy Network's Roadmap to Research Advocacy.
FORMAL TRAINING PROGRAMS FOR ADVOCATES IN (BREAST) CANCER RESEARCH
Project LEAD is the National Breast Cancer Coalition's science training program for activists. They offer several courses to bring an educated consumer perspective and critical thinking skills to the important issues and controversies in breast cancer. Available courses range from shorter introductory courses open to all to longer intensive courses in which students are chosen through a competitive application process.
The Research Advocacy Network's (RAN) Advocate Institute is designed to help build advocates' understanding of the medical research system, scientific concepts and safeguards for research participants; it is geared for volunteers with varying degrees of knowledge. They offer on-site training as well as online learning resources for advocates who come to RAN with varying degrees of knowledge. As of April 2013, some of their site was under construction.
The Patient Advocate Program is a component of the San Antonio Breast Cancer Symposium (SABCS). This collaborative patient advocate program seeks to help those attending the SABCS to better understand the data being presented and how they affect their advocacy efforts. It is held every December in conjunction with the SABCS in San Antonio, TX.
U.S. Cochrane Center's Understanding Evidence-based Healthcare is a web-based course designed to help consumer advocates understand the fundamentals of evidence-based healthcare concepts and skills. Registration is free and participants are encouraged to finish the course in three months. The six modules focus on understanding medical information and research studies in general, not just for breast cancer.
TUTORIALS AND ARTICLES FOR ADVOCATE REVIEW OR SHORT STUDY
National Institutes of Health's MedlinePlus Breast Cancer Tutorial includes animated graphics, audio and easy-to-read language to learn about the symptoms, diagnosis and treatment of breast cancer.
National Breast Cancer Coalition's Research Basics explains the basics of the scientific method and evidence.
Research Advocacy Network's Skillbuilders offers documents on several cancer topics.
From the National Cancer Institute (NCI):
- Understanding Cancer: Graphic-rich tutorial on the basics of cancer; it can be followed through or select specific topics for review.
- What you Need to Know about Breast Cancer: Designed for people newly diagnosed, but covers basic information about the breast and breast cancer diagnosis and treatment.
- Introduction to Genetic Terms: Specialists in the field of genetics share their descriptions of terms, along with images, animations and links to related terms.
- Epidemiology in a Nutshell: Overview of how epidemiology studies attempt to uncover the patterns and causes of disease in groups of people.
- What is Cancer Proteomics?: Explains the study of the role of proteins in cancer.
- Understanding Cancer Genomics: Descriptions of the role of genes, mutations and more in cancer.
- Learn About Clinical Trials: Overview of process, types and phases of clinical trials for cancer treatments.