Friday, September 27, 2013

Can Twitter Cure Cancer? The Real Story of Social Media's Impact on Cancer Patients


Social media is changing the world!! That's what people keep telling me. But is it true? Other than turning erstwhile normal 13-year-olds into zombies who post photos on Instagram and follow Justin Beiber's incoherent Tweets all day rather than finishing their homework, has the social media explosion really amounted to anything revolutionary? Actually, yes, it has. Especially when it comes to our health. 

A recent study by Brigham Young University found that more than 60 percent of Internet users in 2013 use social media to find health information. But my experience as a cancer patient and advocate tells me anecdotally that this percentage is even higher within the nationwide cancer community. I know very few cancer patients - even seniors - who haven't used social media at one time or another.


No, Twitter hasn't cured cancer. But cancer patients and their loved ones tell me all the time that social media has changed their lives. The most obvious change is that we're just so much more informed now. Seemingly overnight, social media has become a valuable, even indispensable resource for cancer patients seeking answers. It provides us with mountains of information about our illness, and, granted, it can be overwhelming and hard to discern and decipher. But too much information is always better than not enough. Last I checked, knowledge was still power. 

Social media helps us learn more about all our treatment options - including ones that perhaps your doctors haven't mentioned - and enables us to find fellow patients who have the same type of cancer. It even makes it easier for us to communicate with our doctor. 


I wish I'd had social media when I was first diagnosed with stage IV cancer back in 1996. Facebook, Twitter, YouTube, LinkedIn, Instagram, MySpace, Pinterest, Tumblr, Google Plus – none of these ubiquitous sites existed then. Neither did Google. In terms of researching my cancer and finding and assessing a clinical trial, which ultimately saved my life, I was on my own. Social media has changed all that.


But arguably the most significant way in which social media has changed things for cancer patients is less tangible, but more profound: It has given us the sense that we are not alone. 

"Social media has truly changed the landscape for cancer patients," suggests Ken Wisnefski, CEO of Webimax, one of the nation's leading Internet marketing companies. "Cancer support groups have been around for decades, but some people had to travel great distances to interact with their fellow patients. Social media allows you to interact with others whenever you want, and on your terms."

Ken notes that even middle-aged and senior cancer patients are now embracing social media and adapting to mobile technology.

“We've got clients, including big retailers, who two years ago were seeing five to seven percent of their traffic coming from mobile (smart phones). Now it's around 70 percent," he says. "This applies to the cancer community, as well. Social media has become a hugely important outlet for cancer patients, it's both educational and therapeutic. And they're increasingly using smart phones to get there." 

Among the nation’s leading social media networks designed specifically for cancer patients is CancerConnect.com, which is used by individuals - including more than 50,000 cancer patients, me included - and by many of the nation's most prestigious cancer hospitals, including Memorial Sloan-Kettering Cancer Center, Dana Farber, The Ohio State James Cancer Institute, The Seattle Care Alliance, The Roswell Park Cancer Institute, and more. 

CancerConnect was founded three years ago by Dr. Charles Weaver and his two sons. Charles, an oncologist and former cancer researcher, ironically came up with the idea as he was complaining to his two sons that they were spending too much time on Facebook.

"My oldest son had cancer, sarcoma, six years ago, before Facebook really took off," Charles explains. "We live in a small town, there are no other patients in our small town with sarcoma or kids with cancer for that matter. He went through treatment, which was surgery, and everything was fine. Four years later, I walked into our study room, and he and his brother were on Facebook. I just shook my head. I told them they were wasting their lives, yada yada. But they barked back at me and told me I didn't understand. The boys described to me how my one son could have used social media during his cancer, how he could have met other people and talked about his situation. At that point I said, 'Tell me a little more about this thing called Facebook'."

Charles says his kids proceeded to walk him through how it worked, then they sat down as a family and designed CancerConnect. "It was a family project that came from my willingness to listen to my kids in a moment of, well, rage," he says with a laugh. "They opened my eyes."

Charles says it is the little things that have contributed to the site's swift success. "We had it password protected at first, for example, but one of my sons said that if people could use Facebook to join, our enrollment would increase," he says. "This is before everyone started allowing you to join things via Facebook. My boys were ahead of the curve. As a result of that, our enrollment went up 40 percent the day we did it." 

Charles and CancerConnect team - I am now a member of that team as a patient advocate and writer - did plenty of market research before launching CancerConnect asking what users seek.

"People want to communicate with someone in their situation, get validation of what their doctor said, and receive factual information," he says. "What was most important to them, though, was a bit surprising. They wanted the ability to give back. That has been the coolest part of this venture. The most popular feature is not even something we thought about. Giving back to others is big part of the healing process, and it is an ongoing process." 

Charles says his goal with CancerConnect was to provide a "safe, secure and ad-free medium where cancer patients can connect with each other and share and ask questions."

Another recent social media phenomenon is TwistOutCancer (TOC), a non-profit founded two years ago by Jenna Benn Shersher, who was diagnosed with grey zone lymphoma, a rare type of blood cancer that afflicts fewer than 300 people in the United States.

When she was going through her very difficult chemo regimen, Jenna says she felt increasingly isolated. Just months after finishing her treatment she established TwistOutCancer, which harnesses the power of personal connection and community to support those touched by cancer. 

"Social media saved my life," Jenna says. "TwistOutCancer is all about people putting their own twist on cancer. It's about exchanging messages of hope, and whatever else you want to say, via social media."

Another pioneer in the social media and cancer space is Liz Hart McMillan, an inspirational survivor of an aggressive form of B-cell lymphoma that kills nearly half of those diagnosed with it within five years. Liz, who was a case study in an academic journal of innovative use of social media, currently consults with cancer hospitals and other organizations that are seeking to improve their social media profile.



In 2008, she founded one of Facebook's very first cancer support groups. "Facebook is a virtual town square where folks can meet up with people from all corners of their lives and exchange any level of information they want  – from everyday to emergent – at any time," suggests Liz, who currently runs a popular, informative Facebook site for lymphoma patients and survivors called Hope for Lymphoma.

"Just when a patient with a chronic or serious disease is most in need of social support and least likely to get it from real world friends and family – many of whom disappear under the strain - Facebook comes to the rescue and provides rich communities of comrades in arms," Liz says. "This is a huge change in the lives of patients."


Is social media really changing the world? You bet it is!






16 comments:

  1. Awesome article Jamie, and I agree Social Media IS changing the world we live in.

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  2. Social media has helped me tremendously when my family and friends kept insisting that I "didn't have cancer" because I was in remission. It's a place to go to talk where everyone in the same boat understands.

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