Social media bombards users with memes, cat videos and political squabbles.
For thousands of women facing an aggressive form of breast cancer, Facebook recently brought another, less common offering: hope.
Indiana University researchers and the Vera Bradley Foundation for Breast Cancer used the popular networking website and Instagram to recruit participants for a clinical trial. The first-of-its-kind social media effort jump-started a once-moribund effort that led to a Dec. 13 announcement that doctors say could save the lives of patients with triple negative breast cancer.
“We were having a really, really difficult time finding patients,” said Casey Bales, project manager for triple negative breast cancer research at the IU School of Medicine.
She coordinates clinical trials – studies in which patients receive drugs or other treatment to try to understand their effects on health outcomes.
The breast cancer trial, begun in 2014, wasn't going well. Three years into the study, less than 40% of the patients needed were enrolled.
“The trial was in jeopardy,” Bales said last week.
It was saved in 2017, when Facebook posts from the Vera Bradley Foundation for Breast Cancer and IU researchers about a trial using genomics – the study of genes and their functions – to find weaknesses in cancer tumors appeared. Within months, 129 patients were taken in, the trial was full and researchers set to work studying the women.
Recruiting through social media has become an important tool for physicians and medical researchers, who can sometimes have difficulty finding patients with specific forms of diseases they are trying to study. Triple negative constitutes about 8% of breast cancer cases, affecting about 100,000 women in the U.S., according to a study from Georgia State University researchers.
Doctors often lead patients to clinical trials by referring them to researchers. It's a long and cumbersome process that also involves interviews with physicians and research nurses to discuss eligibility.
But experts say social media has cut costs and wait times for researchers eager to produce results. Instead of waiting for patients to appear in clinics, researchers now seek them out.
“We are implementing social media efforts pretty much on every new trial,” Bales said.
The National Cancer Institute last year held a two-day workshop on social media and clinical trials. Doctors and researchers there said “social media can play a major part in informing providers and patients about participation in clinical trials,” according to an executive summary of the event.
“Social media gives us an opportunity to leverage communities and resources to interact with a much broader community than we've been able to reach before,” the report said.
At least one company, Seeker Health, helps match patients to researchers. Founder Sandra Shpilberg said she used Facebook to find patients after her former employer was struggling to recruit women to study recurrent miscarriages, according to a 2017 article published in the American Journal of Managed Care.
Triple negative breast cancer – named because it lacks three traits typically found in other forms of the disease – is challenging to treat and often affects young women and black women. Five-year patient survival rates are lower than with other forms of breast cancer.
IU researchers Milan Radovich and Bryan Schneider studied triple negative breast cancer and presented findings from the clinical trial this month at the San Antonio Breast Cancer Symposium.
They found that women whose plasma contained a specific genetic material from a tumor had a 56% chance of being cancer-free in two years, after chemotherapy and surgery. Women without the material had an 81% chance the disease wouldn't come back in that time.
That's significant because it means doctors can now predict whether the disease will recur and determine which women likely will remain cancer-free.
A study next year will focus on triple negative breast cancer patients at high risk for recurrence and evaluate treatment options.
“Addressing an issue of importance in Indiana and globally, our IU cancer researchers are making novel discoveries that have the real potential to impact women with triple negative breast cancer,” said Dr. Patrick Loehrer, director of the Melvin and Bren Simon Cancer Center at IU.
Lynda Houk, executive director of the Vera Bradley Foundation for Breast Cancer, said that impact might never have been felt without Facebook.
“We put the ad out – next thing I know, the trial is full,” she said.
The foundation was established in 1998 to fund cancer research. It raises money for the Vera Bradley Foundation for Breast Cancer Research at IU – a separate entity focusing on research rather than fundraising – through donations and fundraisers including the Classic, an annual weekend featuring sporting events such as golf and pickleball. More than $2 million was raised last year, and the foundation has donated $34.6 million since its creation.
“This is why we're doing it: Our survivors and our researchers,” Houk said.
Lisa Hayes is a survivor.
The 62-year-old Indianapolis woman was diagnosed 12 years ago with triple negative breast cancer.
“I didn't even know (at the time) there were different kinds of breast cancer,” she said in an interview last week. “I just thought breast cancer was breast cancer. That's a scary feeling, to know you had a very aggressive kind of breast cancer.”
Hayes endured surgery to remove the cancer, eight rounds of chemotherapy and 33 rounds of radiation. She now leads R.E.D. Alliance, an advocacy group working to reduce late-stage diagnosis and death rates for black women with cancer. R.E.D. stands for Reaching to End Disparities.
Her cancer is gone, but Hayes has wondered whether it might come back. She did not participate in the recent clinical trial but said the research is important to her and other survivors.
“It's great news to hear what they have done,” she said. “It gives hope and promise to everyone coming behind me. It's very personal to me, in that respect.”