California Breast Cancer Research Program Activities

Dissemination of Research Results

The CBCRP is committed to disseminating the results of the research that it funds, both to the scientific and medical communities (to advance the understanding of breast cancer and its treatment) and to the public (as stakeholders in the Program). To this end, funded research is widely publicized in a variety of ways:

Researchers also publish final results in peer reviewed scientific journals and present them at scientific conferences; these publications and presentations are tracked by CBCRP.

The legislation that established CBCRP included the following additional objectives for the Program:

“Provide for systematic dissemination of research results to the public and the health care community in order that these findings may be applied to the planning, implementation, and evaluation of breast cancer-related programs.”

“Develop policies and procedures to facilitate the translation of research results into commercial, alternate technological, and other applications.”

“Development of appropriate linkages to nonacademic entities, including voluntary organizations, health care delivery systems, industry, government agencies, research entrepreneurs, and public officials.”

California Breast Cancer Research Symposium

CBCRP held its second Symposium in September 1999, bringing together individuals with a wide variety of backgrounds, but a common interest in determining the cause of, and cure for, breast cancer. This symposium was distinct from most other scientific conferences in that it had a strong attendance by breast cancer advocates and the community at large, and presentations were geared toward the general public.

The content and the composition of the symposium reflected the goals of CBCRP. Over half of the more than 500 attendees characterized themselves as lay people. The activities available to the participants included: listening to Keynote Speaker Susan Love, M.D., attending the plenary session on Prevention of Breast Cancer, viewing artwork by and about people with breast cancer; visiting exhibits by non-profit breast cancer organizations; attending informational seminars about how to be funded to do breast cancer research; and attending talks and posters given by investigators who were funded by CBCRP.

The next California Breast Cancer Research Symposium is now being planned for September 2001 in Oakland.

Collaboration with Communities

Close collaboration with organizations and individuals involved in breast cancer issues is a guiding principle of the CBCRP. Breast cancer activists participate in all levels of Program activities and decision-making. Some of this inclusion was built into the Program with the enabling legislation (such as the composition of the Advisory Council). Active collaboration between breast cancer advocates and the Program administrators has made this relationship and inclusion much broader.

In the broadest sense, the people of California are the ultimate recipients of any Program benefits. Efforts to reach these people with the research results funded by the Program fall into two major activities — dissemination and discussion of research results, and translation of research results into services that reach women, both described above.

Advocates actively participate in generating ideas and advising the Program on its strategies to make a difference in breast cancer. The current CBCRP Research Priority Issues were developed from recommendations made at the 1996 Public Advisory Meeting. At that meeting, CBCRP brought together activists, advocates, survivors, health care providers, health educators, biotechnology industry scientists and academic scientists, who worked together to develop and prioritize the issues they thought most critical to breast cancer research.

Activists have always brought their perspective to assessing the innovativeness, potential impact, significance, and feasibility of individual research proposals submitted to the Program. Breast cancer advocates review every proposal submitted for funding, and serve as full voting members of the peer review panels.

Another area in which we have advanced the inclusion of advocates is the research that CBCRP funds. The Community Research Collaboration Award, developed in 1997, requires a partnership between community members (such as a breast cancer advocacy organization) and research scientists. The partners work together to identify the research question, develop the research plan, carry out the research, interpret the results and disseminate to the community. The result is mutual learning and research that is important to the scientific and lay communities. This award type, expanded in 1998, is helping to spread CBCRP's principle of community involvement and collaboration among scientists and is resulting in investigations in areas of research identified by, and important to, communities across the state.

The voices of breast cancer survivors are carried into all major Program decisions by involvement of advocates on the Advisory Council — the body that determines the Program's strategies and funding priorities. With one-third of the members being breast cancer advocates, a diverse range of activist opinions is heard and brought to bear on all decisions. Finally, the Advisory Council has chosen to ensure that breast cancer survivors are not only seated at the table, but share the leadership of the Council. In all of its five years, the Chair or Vice Chair has been a breast cancer advocate.

These efforts establish effective dialogue with groups and individuals involved in breast cancer issues. They assure wide dissemination of research results, funding priorities that are important to those most affected by breast cancer, and funded projects that respond to these priorities.

Program Evaluation

The mission of the CBCRP is to reduce the impact of breast cancer in California by supporting research on breast cancer and facilitating the dissemination of research findings and their translation into public health practice. Are we fulfilling this mission? We believe we are, but we also believe that our future work should be informed by evaluation of past efforts. Thus, in 1999, a Council committee was formed to develop a formal evaluation of the past five years of research funding. This Committee is currently developing processes to answer such questions as:

Evaluation activities are planned to take place in 2000 and 2001.