By Amy Wu
Caught amidst a tsunami of daily news stories, posts and news alerts – Facebook, Twitter, Buzzfeed, NPR, The New York Times, VICE, CNN, The Guardian and The Washington Post, where do I start? I click, I swipe, scroll and scan. Since the advent of the smartphone and the ease of the wireless network, this has become my ritual. And little surprise since I’m a self-admitted news junkie, a journalist and also a young survivor.
Wearing multiple hats, I come with a unique if not fresh perspective viewed through a multi-faceted lens. I am a young breast cancer survivor and also a veteran journalist. I’ve been a patient and a news producer and consumer.
As a survivor, the instant connection to information, whether it be websites, print or increasingly news posted on Facebook, has been eye opening but also somewhat disconcerting at times especially when articles generate more questions than answers. As a journalist in the digital age, I come with a full understanding that most articles have the goal of attracting more readers and clicks, and hopefully in the process inform (fingers crossed). In rapidly shrinking newsrooms, that are hemorrhaging print advertising and subscribers, publishers are scrambling for advertising and revenue in the digital world.
And why does this matter when it comes to news? At a time when fake news is making headlines, programs such as XRAYS are all the more pivotal for patients, medical practitioners and yes journalists too. The program examines the accuracy of news articles related to news articles about young women and breast cancer, and takes a deep dive into the validity of sources. It sends a message out to media organizations that they are accountable for the information acquired and delivered.
As a patient the information we receive is golden, and from the vantage of being a young survivor, information is a good thing.
The social media stratosphere – with its many private support groups and advocacy organizations – coupled with smartphone is a blessing.
When I was diagnosed and treated for aggressive DCIS in 2013 at age 37, I was living and working overseas in Hong Kong, where language and cultural barriers left me in a scary place. My relatives never mentioned the word “cancer,” perhaps thinking they were protecting me by pretending it didn’t exist.
Thankfully there was Google and Facebook. Websites of advocacy organizations such as Susan G. Komen, Young Survival Coalition, Living Beyond Breast Cancer and FORCE, were an oasis. I welcomed the support, camaraderie and information shared with me.
Through the sites and the “private support groups” on Facebook, I became fast friends with fellow young survivors and advocates who shared their personal stories, resources, and medical contacts. They provided me with as much or as little information as I wanted. As part of support and sisterhood, they forwarded me articles from a spectrum of media sources, some from mainstream press, others from health magazines, and a few forwarded me actual research articles or links to scientific studies.
“Give me more,” became my mantra.
Beyond my team of breast surgeon and oncologist and immediate family, I started my own private “library” of articles many of them curated through late night Google searches. There was an online folder and actual folder of articles.
Many of the pieces were advice-driven on everything imaginable from diet (no dairy) to sex to prevention (don’t wear bras and use deodorant). Other articles attempted to address my question of why, what were the roots of breast cancer at a young age? Was it my previous Diet Coke addiction or the horribly polluted Hong Kong air?
I’ll admit it, at times I treated the information as gospel rather than reading them with the healthy skepticism that I’ve been trained to do as an investigative journalist. I devoured the information from perspective of a patient, if it’s in print it must be accurate, right?
As a patient I was desperate for information. At one point I even created “young women and breast cancer” as Google alerts, only to find many of the articles skimmed the surface. In October, I fast learned, there was an Everest of articles and media coverage, most of it surrounding pink ribbon fundraisers.
My hunger for more information as a patient wasn’t entirely satisfied. It would be nice if the coverage were more consistent, or explained scientific studies in a language that was informative, interesting and understandable. There was some of that but not a lot.
In the years since my diagnosis, treatment and recovery, I had an epiphany — as a journalist and at the time a social scientist in the training.
My comrades, yes the same folks I broke bread with and had drinks with, were writing these articles. Most of them were liberal arts majors like me, with little to no training in medicine or science. Most of them were actually notoriously bad in science and math. Most were left brainers. But they were ninjas when it came to writing, reporting, asking questions and they had a knack for what attracted and enticed readers.
In the rapidly changing media and in this new digital world, we all shared a similar goal of expanding our readership and our brands.
My former PhD advisor and I agreed that when people are hit with health ailments they often become Google monkeys, desperate for answers. But who was to say the information was accurate if even true? How many of us vetted the news sources? Are journalists really qualified to write medical stories? Shouldn’t an MD be filtering the articles with a stamp of approval? I mean if Dr. Oz, a real MD, was promoting items in salesman fashion, who was to say what was true or false?
A paradox? Not quite
The needs of the media and patients often conflicted, if not clashed.
In this rapidly changing media landscape, the goal of a journalist was not only to inform and educate (in some cases it really wasn’t), but rather attract as many clicks as possible. The more clicks and views the more advertising, online and offline. Finding ways to hook the audience was not an option, it was a necessity in this profession and our livelihood.
Little surprise that videos and visuals and even new-fangled features such as virtual reality get the most clicks. In the digital newsroom my colleagues and I are expected to not only write, but take photos, videos, and post on Facebook, Tweet and Instagram.
Writing a well-researched and analytical piece – especially in cases of medicine or science – takes a lot of mental bandwidth and time. Cancer, breast cancer, are serious, and more often than not the editors and readers want something fun. In my brief stint working for a news site called Carbonated TV, I learned (with some dismay) that the following articles – Jesus ice skating, a dancing porcupine, and headlines such as “The week in 10 haunting, mesmerizing, and peculiar images” earned the most clicks.
As a journalist, and as someone who has worked in the industry for 24 years and counting, I find myself drinking the Kool-Aid so to speak — for the clicks, for the audience, for my professional livelihood. “Think digital,” my colleagues and I repeat this mantra.
The industry is also shrinking, manpower and resources are on the line as media organizations desperately wrestle with how to earn money. In the changing landscape it’s now rare that most news organizations have a designated medical or science of health writer. Many organizations have even cutback their business and prized sports pages.
At my own news organization we’ve gone from eight reporters to two.
I’ve become an instant generalist. On any given day I’ll write a story on city council votes, retail sales, lack of affordable housing, the homeless problem and dead celebrities. By pure necessity I’ve had to parachute in and become an instant expert. On any given day I not only write a story, but take photos, videos, Instagram, Tweet and share and re-share my information on Facebook.
But I’m competing with ordinary folks. The vast world of the Internet and social media and smartphone allows anyone – including my grandmother and next door neighbor – to write and share information. Anyone can post anything these days. Some media organizations such as Patch.com and Huffington Post have even built their business based on content from bloggers.
In Chinese the word “crisis” includes characters for “danger” and “opportunity.” As a journalist, I challenge my comrades and I to find new ways of telling stories about breast cancer. Rather than writing lengthy articles about scientific findings, why not use video, infographics or even virtual reality to share the information? There are innovative ways to make medical and science stories more interesting and informative. Hyperlinking is another way to ensure that an article is accurate, why not link directly to the scientific report and the original source? Why not have a panel of MDs and scientists who vet medical articles?
Readers, that’s me and you, needs to be savvier when it comes to vetting and filtering news. Take a close look at the sources and who they are. Diversify your news sources and consumption, a mix of traditional sources such as The New York Times, NPR and newer ones like Buzzfeed and VICE.
Finally – wearing the multiple hats I do – I can say that the fast changing media landscape is both a blessing and a curse. As patients, as consumers who face health issues, we turned to Google when we face an ailment, when something goes awry. In the periods of anxiety driven time before diagnosis and even during, we cling onto the “search results” as if they are a lifeline.
Thankfully the journalist in me kicks in with a bit of skepticism. The words “fact check” loom over my head leaving me weary, but ultimately relieved.
Amy Wu is a journalist, a young survivor, and a member of the FORCE XRAYS steering committee.Tags: breast cancer journalism, breast cancer media, FORCE, hereditary cancer, young survivor