Since its inception in 1993, CBCRP has encouraged engaging advocates from breast cancer or other relevant community groups in investigator-initiated research projects. CBCRP began funding academic and community partnerships in 1997, through our Community Research Collaboratives, a leading and successful example of community-based participatory research. In 2011, our Breast Cancer Research Council decided that the investigator-initiated awards needed to involve advocates in a more substantive way.
This page refers to the Advocates that are and will be collaborating in the CBCRP investigator-initiated awards: IDEA and Translational.
Research advocates provide a "human face" to the science.
A growing body of evidence shows that health and medical research benefits from being directly informed by the experiences and knowledge of those affected: those who have or had the disease, those who care for people with the disease, or those who represent a specific community impacted by the disease. These people can become Advocates for their community by helping scientists identify the needs of patients, families, and communities and offering a practical perspective on research topics, methods and results. Working through community organizations – such as community clinics, breast cancer advocacy or women's health organizations, and other groups serving women with breast cancer – these advocates help to ensure that the research is relevant and that the research findings are applied as soon as it is feasible.
To assist applicants and Advocates in greater advocate involvement that benefits all parties, we have created and compiled some resources. We will add to and update these pages as we evaluate the process and technical assistance; please let us know if you have questions that are not addressed here.
What and Who is an Advocate?
CBCRP's definition of Advocate is very inclusive. Any person that is concerned about breast cancer and wants to be sure that we fund research that is relevant and most likely to have an impact is potentially an Advocate for CBCRP-funded research projects. Many different names have been used for the role that we call Advocate, including Community Member, Community Partner, Consumer, Consumer Advocate, Patient Advocate, Research Advocate and Research Buddy.
A potential advocate to a CBCRP-funded research project must meet three criteria: 1. California residency; 2. Active involvement in an appropriate organization or community; and 3. Ability to represent the priorities, concerns, needs and views of the community (or organization) and not only her/his personal perspective.
Ideally, advocates will have knowledge of their community, experience working and communicating with the members of the community, and some training or background in breast cancer science or research. We recognize that not every potential advocate will have all of these qualifications, so we have included a list of training and other resources below and hope to facilitate mentoring.
What is a Community?
One definition of community is a group of people with diverse characteristics who are linked by social ties, share common perspectives, and engage in joint action in geographical locations or settings. (MacQueen et al.) For CBCRP-funded research, it is important that the community be located in and relevant to Californians affected by breast cancer, but it does not necessarily need to be a breast cancer-specific group.
The type of community that may be represented in research can and should vary depending on the topic and approach of the study and who would be impacted or concerned about that topic and/or the approach. A few examples:
- A study about treatment of triple-negative breast cancer is relevant to a patient advocacy organization which can help address issues of acceptability.
- Research into chemicals that might affect breast cancer risk would be of interest to an environmental group that addresses the source of the chemical—especially in communities that are exposed or suspect a breast cancer cluster.
- Assessing screening rates, conducting a GWAS study or any research involving specific racial or ethnic groups should include representatives of that community.
- A mouse model study of metastasis could be of interest to any breast cancer organization, but of particular concern to groups that specialize.
Scientist and CBCRP Grant Applicant Resources
We understand that many scientists are not accustomed to working with lay community members in their research. To help applicants meet the requirements in the CBCRP application process, we have produced a list of Frequently Asked Questions (FAQs) specific to our IDEA and Translational award types.
- FAQ for Scientists on CBCRP's Advocacy Involvement Requirements for IDEA & Translational Awards: this provides general information about advocate involvement in research, specific application requirements, and working together in during the study.
- A webinar for Cycle 19 applicants and Advocates addresses many practical issues for the application process.
The following resources will provide researchers with more information about and tools for working with Advocates.
- The University of California, San Francisco offers Community-Engaged Research Guides and Resource Manuals, including a Quick-Start Guide for Researchers (note: the examples are not geared to basic science, but the principles and many examples are applicable.)
- Uncovering the Benefits of Participatory Research: Implications of a Realist Review for Health Research and Practice (Jagosh et al, 2012).
- The University of Western Australia's Consumer and Community Participation Program has a series of Fact Sheets based upon their publication: Consumer and Community Participation in Health and Medical Research, A practical guide for health and medical research organizations.
- The INVOLVE project from the UK's National Health Services offers Resources for Researchers.
- The National Cancer Institute's Advice to Researchers for working with Advocates, including Getting Started and Maintaining Success.
CBCRP Advocates and Potential Advocates
CBCRP requires applicants and funded researchers to engage breast cancer or community advocates in their projects. This will mean that we need more organizations and people to work with those 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? If you are a resident of California, actively involved in a breast cancer or other organization or community; and are able to represent the priorities, concerns, needs and views of your community, then please register to be an Advocate!
Do you want more information about what Advocates do? The Research Advocacy Network's Roadmap to Research Advocacy can be useful for people interested in becoming an advocate for cancer research and goes beyond CBCRP.
Below are external links to resources from the National Cancer Institute and from breast cancer and other advocacy organizations to help new and experienced advocates learn more about breast cancer and research.
Training Programs for Advocates in (Breast) Cancer Research
National Breast Cancer Coalition's Project LEAD
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.
Research Advocacy Network Advocate Institute
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.
Alamo Breast Cancer Foundation's Patient Advocate Program
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
This web-based course, created by the United States Cochrane Center, is 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.
Topics for Advocate Review or Short Study
National Institutes of Health's MedlinePlus Breast Cancer Tutorial: This online 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.
NCI's Understanding Cancer: This slide set contains graphic-rich tutorial on the basics of cancer; it can be followed through or select specific topics for review.
NCI's What you Need to Know about Breast Cancer: This site is designed for people newly diagnosed, but covers basic information about the breast and breast cancer diagnosis and treatment.
Research Advocacy Network Skillbuilders: Offers PDF documents on several cancer topics.
NCI's Introduction to Genetic Terms: In addition to definitions, specialists in the field of genetics share their descriptions of terms, and many terms include images, animation, and links to related terms.
NCI's Epidemiology in a Nutshell: An overview of how epidemiology studies attempt to uncover the patterns and causes of disease in groups of people.
NCI's What is Cancer Proteomics?: This site explains the study of the role of proteins in cancer.
NCI's Understanding Cancer Genomics: A slideshow with descriptions explaining the role of genes, mutations and more in cancer.
NCI's Understanding the Approval Process for New Cancer Treatments: Includes a section on Clinical Trials, describing the process, types and phases.
References for Advocates
The following references can be useful for looking up specific terms or ideas.
- NCI Consumers' Cancer Dictionary for Peer Review (PDF): concise definitions of technical terms frequently used in cancer research grant applications
- NBCC's Breast Cancer Research Glossary
- Dictionary of Genetics Terms
- General information about cancer causes and risk factors: offers links to information on a variety of cancer risks
- Cancer genetics
- Screening and Testing to Detect Breast Cancer
- Understanding Prognosis and Cancer Statistics: Questions and Answers
- Types of cancer statistics
The NCI offers additional resources for Advocates at http://advocacy.cancer.gov/getinvolved/resources.