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 eradicate 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 $1 billion. 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 eradicating 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
breast cancer research, in both the public and private sector. This covers a
wide range of research that goes beyond screening, diagnosis and treatment, such
as measuring the quality and accessibility of health care and exploring
potential links between the environment and breast cancer.
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 medicine. 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.
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 activists must be included on all breast cancer research
peer review panels, in both the public and private sector. In addition,
activists 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-activist 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 at discussion sessions and in
mentoring programs. 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 their daughters and
granddaughters 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: eradicating 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.
Source :
http://www.natlbcc.org/bin/index.asp?strid=591&depid=9&btnid=1