SCIENTIST AND GRANT APPLICANT RESOURCES

Here are some resources to help scientists who may not be accustomed to working with lay community members in their research:

FAQ for scientists on CBCRP's advocacy involvement requirements for IDEA & Translational Awards (pdf)
UCSF offers Community-Engaged Research Guides and Resource Manuals. (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
The University of Western Australia 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 Office of Advocacy Relations

Understanding advocacy

Resources about advocacy for investigators and advocates who are or will be collaborating on CBCRP investigator-initiated award types.

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 Collaboration (CRC) awards, 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 includes resources about advocacy for investigators and advocates who are or will be collaborating on CBCRP investigator-initiated award types: IDEA and Translational awards.

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:

California residency
Active involvement in an appropriate organization or community
Ability to represent the priorities, concerns, needs and views of the community (or organization) and not only her/his personal perspective

Advocates should 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.

Are you interested in becoming an advocate for CBCRP-funded research projects?

How does CBCRP define "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" (see MacQueen et al.). For CBCRP-funded research, it is important that the community be located in California 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 of studies and their relevant communities/organizations:

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.