Dedication to Affecting Real Change

Ed. Note: Champions of Change is a weekly initiative to highlight Americans who are making an impact in their communities and helping our country rise to meet the many challenges of the 21st century.

Sitting around in a circle with 14 other Champions of Change, I am overwhelmed by the intense passion surrounding me, the commitment of each one of the champions towards a common goal of finding a cure for breast cancer.

The women on the dais, and all those in the room, have accomplished so much in the fight against breast cancer. We have come a long way but we are not champions, only workers along that path to change.

Passion is not enough. I look at everyone and realize that we desperately need to have a directed, strategic approach towards solving the myriad of problems before us to enable us to reach our common goal.

It all begins in the research lab where careers are based on publications and collaboration is not rewarded.  We need to change the incentive system, to break down the silos that separate one institution from another, one specialized field from another, and promote cross fertilization so that we can better focus our limited funding resources.

If we take a look at the number of studies, their limited scope, the duplication of effort, and most seriously, the bias built in when failed research projects are never reported, allowing the same research question to be asked yet again and perhaps funded one more time.  We need to act smarter to encourage the maximum impact from diminishing research dollars.

If we look at clinical trials, we know at NBCC that not all trials are worthy of accrual, and that advocates should have a place at the table right from the beginning in designing those costly trials towards a meaningful outcome, one that is pertinent to the treatment and eventual cure end of to breast cancer.

All this requires educated consumers.  One of the signature programs at NBCC is ProjectLEAD, where promising advocates learn the biology and epidemiology of breast cancer in an intensive 5 five-day course, so that we are prepared to take a seat at any table, including evaluation of grant proposals and sitting on the local community hospital IRB, to name two of the many roles that advocates can play.
Educated consumers are also are needed to disseminate information in order to ensure that all Americans, including the underserved, have access to the best possible care.

As a member of the Effective Stakeholder group at the Agency for Healthcare ReEsearch Quality (AHRQ), we have been working on ways to educate consumers so they fully understand the quality of the evidence behind treatment choices and feel empowered to be an active participant in the decision making process concerning their care.

We are all champions of universal health care and the Affordable Healthcare Act, which takes a major step in that direction.  Working to end breast cancer is a part of overall healthcare reform, and I would wish for the government to have more workers as involved, passionate and accomplished as the Champions of Change I sat with at the White House this week.

Amy is actively involved in NBCC’s Breast Cancer Deadline 2020®, with the goal of ending breast cancer by that date. She is a Team Leader for the Artemis Project, a five year strategic plan to develop a preventive breast cancer vaccine, and will participate in NBCC’s Prevention Summit in October.