Alice Yaker Video (Text Version)
Session Title: Morning Session – Success Models: What Can We Learn?
Title of Presentation: Survivor’s Perspective
H. Kim Lyerly, MD, Duke University School of Medicine: First we have Alice Yaker, who will be starting the session. Alice is a breast cancer survivor and the Executive Director of SHARE. Alice is going to start and then we’re going to hear some remarkable stories of progress made in eradicating diseases that have a profound effect on our society and our global community. Alice.
Alice Yaker, SHARE: Thank you. We have lost tens of thousands of women to breast cancer, many of them women whom we’ve personally come to live and admire—Rayola Belfield, Jane Sawyer, Carol Hochberg, Sandra [Zuchfixuler], Marsha [Presky], Lila Romeo, Elaine Lowenstein, Rosalyn Donavan, Susan Cohen. Success for all of us, for you the investigators and medical community, for us the advocates, the survivors, and those at risk must be to eradicate breast cancer, to prevent it from developing, and for those already diagnosed, to stop breast cancer metastasis from taking our lives.
We patient advocates through the National Breast Cancer Coalition have a deadline to eradicate breast cancer—Deadline 2020—but we cannot make this happen without your involvement and commitment. We need to step back from the standard ways we’ve conducted scientific research that has resulted in painstakingly small incremental change. We need to create paradigm shifts, new approaches to eradicate breast cancer by the year 2020.
A paradigm by definition is a conceptual framework, a specific way of viewing reality, the currently accepted standard model, a way of thinking inside the box. From my perspective over these last 20 years since I was first diagnosed with breast cancer, the second time taking place 3 years ago, what I see are small incremental changes that don’t significantly affect the natural history of the disease, its destructive course within the body; research goals that are too narrow in scope, innovation that while elegant too often has little relevance to eradicating this disease; no real incentive or policy or vehicle to share information with the intent to work collectively; commitments to build careers, publish, compete that take priority over a collaborative approach to end this disease; little incentive to be fearless and bold and think outside the box.
So let’s look at how together we might create—be able to create some paradigm shifts through examples where success has occurred from looking at the world differently, from breaking through boundaries in our thinking, from bold leadership and focusing on the ultimate goal, from recognizing the urgency in reaching that goal and being passionately committed to making it happen.
Now paradigm shifts are not easy. The greatest barrier may be the inability or refusal to see beyond the current models of thinking, to challenge assumptions, to experience chaos, so let’s first look at how we could make eradicating breast cancer the focus of all our research through an example we use in building programs.
When we develop programs at SHARE, the organization I’ve been involved with for 20 years, we create a logic model. That model focuses first on the outcome to be achieved and the impact we want to have on groups or communities. Only when we have this ultimate goal in focus do we look at what activities and resources will enable us to produce the outcome or impact we seek. The paradigm shift here is to make the eradication of breast cancer the outcome and impact of all your work. Only then will the funding you seek, the specific research you engage in, and the results of that research have sufficient significance; only then might we produce large-scale changes in the scientific world view.
Once your goal is clear you need to develop a strategy and by way of example let me tell you the story of Lysistrata. Lysistrata, a play written by Aristophanes, tells the story of how the women of Greece mobilized themselves and created an innovative and bold strategy to end the Peloponnesian War. Lysistrata persuades the women of Greece to collectively withhold sexual privileges from their husbands and lovers as a means of forcing the men to negotiate peace. The women recognized that what they could not accomplish individually might be accomplished collaboratively but even collaborations are not sufficiently meaningful unless there is a collective critical mass that brings its energy and urgency to reaching a goal. For the women of Greece that goal was to end the War; they were tired of sacrificing their husbands and sons to the effort. The strategy was innovative, bold, and fearless and focused on the women’s strengths and collective power.
Lysistrata’s actions were not without its fallout and clearly inflamed the battle of the sexes. But the goal was achieved and the War ended.
Our work here this morning is to look at how a paradigm shift can lead to success. The more modern example I offer is Wikipedia. Wikipedia has become an entirely new way of collecting and exchanging information. It has in many ways transcended the traditional functions of the formal encyclopedia by bringing together the collective work of millions who share information. That information then becomes an organic body that changes as people with an interest in the particular topic add to it, comment upon it, or change it. Wikipedia has its costs and benefits. Its benefits include up-to-date and abundant information, a vehicle for people who care about the topic and want to make a meaningful contribution and do a good thing, easy access to information, an effective though not necessarily efficient way of bringing together different perspectives and thinking out of the box, a recognition that collecting information is a process, not a product, and therefore is never finished.
Its costs include giving up individual or institutional control; the information may not be accurate or credible at a particular point in time. The process may be chaotic and in constant flux with unpredictable and uneven contributions but imagine what this could be like for you, a place to record all research results, a vehicle to comment on the results of others, a fast-moving exchange of ideas and the ability to cross-fertilize, the chance to think about things in unimaginably new ways.
Campaign 2020 is a reality. We patient advocates are ready to work with you to achieve the goal of eradicating breast cancer in the next 9 years. Don’t spend time questioning or doubting whether this can happen. Make a commitment to make it happen, and it will change the way you do the hard work you need to do in the years ahead. Be bold and fearless; challenge assumptions. Don’t be bound by the shackles of narrow career and institutional goals. Mobilize others to be committed to work with you in new and exciting ways.
In David O’Shinsky’s book Polio: An American Story he describes the vaccine quest. And I quote: Old leadership would bring together a band of contentious researchers, provide them with a plan of attack, subsidize their efforts, force them to pool their findings and yes, favor the one among them who showed the greatest urgency in working toward a vaccine. You are a unique group who has been brought together because you have already taken a critical step toward thinking out of the box. If we don’t take this step now together, our partners and daughters, sisters, mothers, and granddaughters will never forgive us.