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.
“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 treatments 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.
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.
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.
“We are implementing social media efforts pretty much on every new trial,” Bales said.
“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.
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 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.”
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