CancerForward Survivor Stories: Everyone Has a Wonderful Story, But How To Tell It?
Editor’s Note: Lisa Gualtieri, PhD, ScM, is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She teaches Online Consumer Health, Social Media and Health, Mobile Health Design (online), and Digital Strategies for Health Communication. This post first appeared on February 19, 2014 on her blog on health, and has been re-published on CancerForward.
By Lisa Gualtieri, PhD, ScM @lisagualtieri
Many health-information websites include stories, but some have richer sets of well-written stories than others. CancerForward is one of them. After reading the stories on CancerForward™, I spoke to Beth Sanders Moore, the founder of CancerForward, to ask her why the Foundation includes stories on its digital platform and how they solicit them.
A bit of background: Beth is herself a thirteen-year breast cancer survivor, her mother is a 32-year breast cancer survivor, and her grandfather was a cancer survivor. Through these experiences she has seen how the experience of being a cancer patient has changed, with people asking questions and evaluating treatment options now in a way they didn’t even 13 years ago. Beth has also seen a change in what survivors want in terms of information. CancerForward was created to meet this demand, with survivorship stories being one of CancerForward’s most important informational components…both for the people who read them and those who tell them. Beth believes that telling one’s story is one of the many ways that people try to make a difference – just like volunteering or making donations. All of those mechanisms provide a way to give back or pay it forward.
Because many people are drawn to celebrities, the stories on CancerForward include those of high-profile survivors, like Cokie Roberts, Maura Tierney, and Mark Herzlich. Most of the stories are of people from all walks of life who have survived cancer. Having seen that the site includes a link to “Share Your Survivor Story”, I asked about CancerForward’s intake process. When someone contacts Cancerforward through this intake portal, a writer assigned by CancerForward replies and works with the survivor to help them tell their story. Some people submit stories that need little editing, while others need assistance because they don’t know how to express their experiences clearly or they become too caught up in emotions when recounting their story. Beth said that people process their experiences differently: some tell their stories soon after treatment, and some wait a long time into their survivorship. The completed stories are catalogued on CancerForward’s site by both cancer type and by practical, physical and emotional issues common to most survivors.
Interestingly, many stories shared with CancerForward are sent in the evening. Beth suspects that with fewer distractions of daily life, most people have more time for self-reflection at night. Too, some may grow lonely at night and want to reach out by sharing their stories. She notes that far more people go on the CancerForward site and read stories than submit them. Some begin the “share” process and don’t finish it. The average time a site visitor stays on the site is about five minutes; some are less than a minute and some are for hours. If site visits are an indicator of popularity, the stories of high-profile women survivors are most popular, followed by the self-written stories submitted by women. That trend tracks with survivorship information consumption in general, says Beth. Historically, women discuss their experiences more openly and more often than men.
CancerForward receives 3-4 story submissions each month via its website. Many comments posted in connection with a story are essentially mini-stories. CancerForward maintains its Facebook page so that cancer survivors and caregivers can make comments and/or post their stories there as well. I asked Beth if she thought people had stigma or privacy concerns about submitting stories. She noted that trends in story-sharing are not highly generalized. Sharing is more accepted in some cultures than others. With the mainstreaming of social media, sharing in general has become common. Still, the motivation to share is a very personal instinct. Letting go of highly personal information is usually decision-based, not an off-the-cuff process. In sum, Beth thinks people feel good about sharing their story and receiving support from others through the comments.
When asked if time and money were infinite what CancerForward would do differently, Beth immediately said they’d add more video stories, which people enjoy. Producing high quality videos is costly, which has prevented CancerForward from creating as many as they would like. Because of the uptick in smart phone video production, there is a project underway in 2014 to accommodate appropriate “selfie” videos and brief self-written stories on the CancerForward site. Because the amount of the site’s educational information and story lines has grown so rapidly, CancerForward is reworking its entire site to make navigating the site and locating content easier for visitors.
In my discussion with Beth, we identified a taxonomy of health-related sites that incorporate stories. They range, at one extreme, from sites that request stories but have none displayed, to, at the other extreme, Weight Watcher’s success stories, which are very professionally done. CancerForward’s stories are professionally presented because of the Foundation’s use of writers to work with survivors. Beth concluded, “Everyone has a wonderful story but not everyone knows how to tell it. We try to help if we can. We believe it’s important to a healthy survivorship experience.”
I asked Beth if she has a favorite story, a question for which she said there isn’t a simple answer. At one time or another, she’s read every story that’s been submitted whether it made it through the publication process or not. “They’re not all upbeat or hopeful, but they’re all real and to me, compelling. There are so many, many facets to cancer survivorship and contexts in which people fight cancer.”
Beth admits that for inspiration, she’s drawn to the stories of adolescent and young adult survivors who’ve readjusted their sails, succeeded in forging a “new normal” in their lives, and are moving forward. And, she concedes there is a story that she thinks about often that speaks to resilience and facing reality. It’s the last conversation Beth had with her friend, Elizabeth Edwards about two months before Ms. Edwards died of breast cancer. Believing it important that survivors speak openly about palliative care and preparing for death, Ms. Edwards allowed Beth to publish their personal conversation as a story for CancerForward. It turned out to be the last “interview” Mrs. Edwards would give about her cancer and her life.
“Elizabeth had a story that moved so many people and still does after her death. Innately, she knew how to tell it. That was good for her and it is for us.”
Tags: adolescent and young adult survivors, Beth Sanders Moore, breast cancer survivor, cancer survivor stories, cancer survivors, cancer survivorship, CancerForward, caregivers, Cokie Roberts, Digital Strategies for Health Communication, Elizabeth Edwards, Facebook, inspiration, Lisa Gualtieri PhD ScM, Mobile Health Design, moving forward, new normal, Online Consumer Health, palliative care, privacy concerns, self-reflection, smart phone video, Social Media and Health, stigma, Tufts University School of Medicine