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Breast Cancer Advocate Involvement in the Research Process

October 2003, Updated August 2019

Position

Breast cancer advocates who are trained, educated and represent a patient constituency must be meaningfully involved in all aspects of decision-making that affect breast cancer research. This is the only way to ensure that funds are effectively spent and adequately address the causes and prevention of breast cancer, develop optimal treatments and cures for breast cancer, and focus on the best possible means to end the disease.

Not Just More Money

The National Breast Cancer Coalition Fund (NBCCF) has fought hard to increase federal funding for breast cancer research, and the results have been dramatic: since 1991 NBCC has helped increase federal funding for breast cancer research by more than $3.6 billion through the defense budget alone. But money alone is not enough to end the breast cancer epidemic. The perspective of the breast cancer advocate must be present everywhere that breast cancer research decisions are made. A true partnership between advocates and scientists is the most efficient and effective way to reach the mutual goal of ending breast cancer, because both parties bring distinct and valuable knowledge to the process.

NBCCF believes that breast cancer advocates must be involved in all aspects of the complete spectrum of breast cancer research, in both the public and private sector. NBCCF has developed core values for breast cancer research that reflect its vision and are fundamental to all of its research-related work. NBCCF’s Position Statement on Core Values for Breast Cancer Research articulates and describes these values: integrity, impact, accountability, respect, beneficence, justice, shared decision-making, and flexibility.

Educated and Accountable Advocates

Along with a right to meaningful participation comes a responsibility to be educated. Advocates must be knowledgeable and confident in order to participate in the decision-making process of science and health care. NBCCF’s educational programs are designed to prepare activists for this role. For example, NBCCF’s Project LEAD is an intensive science course that teaches breast cancer advocates the basic language and concepts critical to understanding scientific research.

NBCCF believes that to have a meaningful impact on the research process advocates involved must be individuals who have been personally affected by breast cancer-in some cases they must be individuals who have had the disease—and must represent a patient-led, patient-centered organization with a patient constituency.

Setting Priorities

Priorities are typically set by leadership in governmental agencies, within industry, individual institutions and professional associations. Leadership does not typically include trained and educated independent advocates, but it should. Involving advocates in priority setting not only enhances the practical relevance and quality of resulting health research and policy decisions, it increases the legitimacy and rationality of decision making, and increases quality and applicability of outcomes.

Policy

Advocates have no agenda other than to end breast cancer. Policies related to topics, such as conflicts of interest, publication criteria, communication of research results and the like, should be set with the influence and leadership of advocates.

Peer Review

The peer review process is the accepted method for identifying meritorious scientific trials and studies. However, the peer review process has traditionally excluded those most affected by breast cancer research – breast cancer advocates. The peer review process is only enhanced by the involvement of advocate peers – activists outside the scientific and medical communities who bring a unique and important perspective to the scientific discussion.

Ideally breast cancer advocates must be included on all breast cancer research peer review panels, in both the public and private sector. In addition, advocates must be involved in the Programmatic Review process, determining priority areas for funding. The Department of Defense Peer Review Breast Cancer Research Program has proven that this is an effective and valuable model of scientist-advocate collaboration.

Clinical Trials Initiative

Clinical trials are a critical area for advocate involvement. Breast cancer advocates can provide important insights into the design of clinical trials and invaluable assistance in increasing awareness and knowledge of clinical trials within the breast cancer community. They must be substantive collaborators in the research process. NBCCF’s Clinical Trials Initiative educates advocates in order to make a meaningful contribution to the clinical trials research process.

NBCCF works with research institutions to link trial investigators with educated breast cancer activists, who then work together in the design and oversight of specific trials. These partnerships include, but are not limited to, participating on trial steering committees, attending investigator meetings, participating in data safety monitoring boards, assisting with protocol and informed consent design, and assisting with outreach and accrual of participants to important trials. NBCCF has established criteria to evaluate quality clinical trials for consumer involvement and works with researchers on trials that meet these criteria to create models for advocate/research partnership. Initiatives such as this must be expanded to dramatically increase the meaningful involvement of advocates in every aspect of clinical trials.

Scientific Meetings

It is important to have meaningful advocate involvement in breast cancer scientific meetings. Advocates must be part of program planning committees and participate as session chairs or co-chairs. There must be opportunities for interaction between scientists and advocates. Finally, breast cancer advocates must be provided opportunities to present their work and their perspective at poster and platform sessions.

Conclusion

Breast cancer advocates bring a wealth of knowledge, energy, and commitment to the research process because their lives and the lives of all those at risk depend on it. By thinking, talking, and planning together in an atmosphere of understanding, respect, and shared commitment, advocates and scientists can create a powerful synergy and hasten the achievement of our mutual goal: ending breast cancer.

About NBCC

The National Breast Cancer Coalition is a grassroots organization dedicated to ending breast cancer through the power of action and advocacy. The Coalition’s main goals are to increase federal funding for breast cancer research and collaborate with the scientific community in the implementation of new models of research; to improve access to high quality health care and breast cancer clinical trials for all women; and to expand the influence of breast cancer advocates in all aspects of the breast cancer decision making process.