HPV Vaccine

Without Patient Stories, We Walk into a Firefight with a Calculator

Storytelling is powerful. Storytelling is compelling. In this age of social media, stories have evolved from words and pages to photos, memes and videos. Unfortunately, “anti-vaccination activists have weaponized stories and weaponized misinformation” and have used their stories to undermine the broader adoption of the HPV vaccine around the world.

Dr. Noel Brewer, chair of the National HPV Vaccination Roundtable, shares why patient stories are essential to combating the anti-vaccination movement.

“Antivaccine activists rely on story telling. We scientists come back with statistics and numbers. While our statistics and facts may be true, they have little power in this arena. We walk into this firefight with a calculator.”

“In the real world, statistics and data don’t hold power, except on pages of a medical journal. What matters is people and their lived experience. Having powerful stories cuts through to what matters.”

Cervivor stories can help fight against the anti-vaccination narrative.

The power of the story in the hands of Cervivor can be used to grow cervical cancer awareness and expand HPV vaccination.

“Vaccine hesitancy is one of the global threats of public health. Legislators and policymakers increasingly seem to think vaccination is waning. That isn’t true. It’s just that the few anti-vaccine people are so loud. They have an outsized voice that is dangerous to the public’s health and well-being.” Their voice can cause people to hesitate, rather than to move forward with HPV vaccinations for their daughters and sons.

In the U.S., HPV vaccination is in fact drifting upward – around 66% of teens have had at least a dose, if not the full course, Dr. Brewer reports. “This is a big accomplishment. But our goal at the National HPV Vaccination Roundtable is to reach 80% having all the recommended doses. This vaccine will save tens of thousands of lives. It’s remarkable that people say ‘no’ to a cancer vaccine. The antivaccine movement and the stories and falsehoods they share play a role in that.”

We have to make our stories as loud and compelling as the stories of the anti-vaccine activists.

Dr. Brewer’s Advice to Cervivors: Have an Elevator Speech

“One thing I would encourage survivors to do: have the elevator speech of your story. There will be many many opportunities to tell your one minute version. It is not so often you have 20 minutes, or even five minutes. But when you introduce yourself, when you meet someone, when the opportunity arises, have your one minute story. Have a few different one minute versions of the different parts of your story. Talking about your lived experience is powerful, and you can have huge impact even in a short time frame.”

In fact, Dr. Brewer many times shares some of the one minute Cervivor Story videos on the CervivorTV Youtube channel. He and his colleagues have shown Lisa Moore’s video hundreds of times, at meetings all around the world, to focus audiences on “what really matters” when they are discussing the HPV vaccine. Lisa lost her life to cervical cancer in 2017, but her story has lived on in a hugely impactful way. All of our stories can have this impact too.

Do you have your elevator speech?

What will you share?

Tap in to Cervivor’s videos, resources and trainings to shape your story, enhance your advocacy and use your voice to end cervical cancer.

A professor of Health Behavior at the University of North Carolina Gillings School of Global Public, Dr. Noel Brewer studies health behaviors. He examines ways to increase HPV vaccine uptake, and his research led to the development of “The Announcement Approach” to train providers to communicate more effectively about HPV vaccination and other vaccines for adolescents. Dr. Brewer chairs the National HPV Vaccination Roundtable, which brings a wide cross-section of stakeholders together to raise HPV vaccination rates and prevent HPV-related cancers.

I had data and statistics in my talks, but that wasn’t telling the story that would move people to action

Chair of the National HPV Vaccination Roundtable, Dr. Noel Brewer has given hundreds of talks at scientific conferences and meetings across the globe. He’s advised the Centers for Disease Control and Prevention and the World Health Organization on vaccination.  He’s one of the most cited researchers in the world. His credentials are impeccable, yet much of the time when he starts a talk, he defers to the experts: patients.

His solution: “Always have people speak who have had the experience. When someone speaks who has had direct experience with cancer, it clears out the mental clutter. It makes you feel. It sets the stage for the important work that will follow.”

Dr. Noel Brewer has shared Lisa Moore’s Cervivor Story hundreds of times to “help people grasp the importance of preventing cancer.”

“To hear about the diagnosis and that awful waiting period. About what they have gone through – the symptoms, the damage caused by treatments, the possible loss of fertility.  These are key parts of the story that survivors can speak about in a personal way that doctors, scientists and other experts simply cannot.”

“As scientists, we often talk about cancer in abstract and technical terms. We convey a lot of important information that doesn’t connect with people’s feelings and imagination. But how can we help people grasp the importance of preventing cancer?” reflects Dr. Brewer.

Dr. Brewer regularly starts his talks with the voice of Lisa Moore. Lisa died of cervical cancer in October 2017, at age 31. Yet through her powerful Cervivor story video, she has educated and impacted thousands.

“I had data and statistics in my talks and trainings, but realized I wasn’t telling the full story. So now, I leave that to Lisa Moore. In her video, she tells the story of her fight with cervical cancer. It’s one minute. It’s powerful. It’s heartbreaking. Every time I show the video, I’m moved by it. And I’ve seen it more than 150 times.”

“At first, Lisa is sitting. She is sewing. She tells her story in very simple and concrete terms. We see her partner in the background, watching her. Every time I show it, people pause and struggle to collect themselves. We sit with Lisa. We feel her pain and her call to action. We take a deep breath together, then we get focused on the work of what we are going to do to prevent cervical cancer.”

Lisa was a true champion for prevention. She educated and advocated and was telling her story…until she could no longer. Lisa lives on in her Cevivor story and in her video, and her passion for prevention and call to action has been seen, heard and felt by researchers, healthcare providers and policy makers around the world. Not just through Dr. Brewer’s use of her video into his talks, but by many others.

“I do many ‘train the trainer’ sessions about HPV vaccination, and connections happen based on Lisa’s video. People often come up to me after, asking if they could also incorporate Lisa’s video in their own outreach. Working with Cervivor, we’ve shared the video many times and amplified the reach of Lisa’s message.”

In video or in person, “Cancer survivors speak with certain authority,” says Dr. Brewer. “You are a moral voice on cervical cancer and all of the ways it affects lives. I don’t know anyone who can speak as powerfully.”

“We’ve shared her video at Cervivor events, and it has been seen and shared many times via our social media platforms. But Dr. Brewer is the one who has really helped to get Lisa’s story to the masses and I am personally thankful to him for that,” said Tamika Felder, founder of Cervivor. “Lisa wanted her story to be shared. She wanted the world to see that not only what cervical cancer had done and taken from her; but also, that it in fact it was not an easy cancer. She wanted her story to help get people vaccinated against HPV so they would not have to suffer the same fate. Dr. Brewer has helped me keep my promise to Lisa. For that I am forever grateful.”

Are you sharing your story?

If you haven’t yet, add your story to our Cervivor Stories. Write a blog post about your experience or your advocacy or about a milestone or simply a memory or reflection and send it to [email protected]. We can publish it and add it to the voice and reach of our Cervivor blog.

As Dr. Brewer reminds us, stories matter. Stories motivate. Stories change minds. Our community’s work sharing our stories is powerful.

A professor of Health Behavior at the University of North Carolina Gillings School of Global Public, Dr. Noel Brewer studies health behaviors. He examines ways to increase HPV vaccine uptake, and his research led to the development of “The Announcement Approach” to train providers to communicate more effectively about HPV vaccination and other vaccines for adolescents. Dr. Brewer chairs the National HPV Vaccination Roundtable, which brings a wide cross-section of stakeholders together to raise HPV vaccination rates and prevent HPV cancers.