The impact of social media on cancer care

The impact of social media on cancer careI recently had the privilege of participating in a meeting hosted by the President’s Cancer Panel on the role of social media in improving cancer control and treatment. The goal was to give advice to the Panel on a planned series of meetings they will be convening to discuss the topic. It was the range and quality of the discussion that day that left me thinking about the broader topic of social media and how it could help improve cancer control going forward.

I do not profess to be a social media expert. I do (obviously) engage in social media in a couple of ways, primarily through my blogs and Twitter (@DrLen), but I am not an addict. And notwithstanding the fact that social media has become a standard communication format for many folks, especially the younger generation, I still wonder how we are going to harness this revolution to improve what people know about cancer, what we can do with that information and how we can raise awareness about cancer-related issues such as new treatments, prevention, survivorship and clinical trials among many other topics.

The reality is that there hasn’t been much impact of social media on cancer care, except in a few areas. Survivorship is one, where patients, families and caregivers communicate in communities about their similar experiences. Celebrities have an influence in social media when it comes to cancer: Angelina Jolie is one of several who have influenced many women by telling their story publicly then having that story reverberate through the media universe.

But social media in cancer has downsides as well. The medium is used to “hype” stories that may not be based on fact or quality research. Cancer centers use social media to increase awareness of their brands, sometimes making claims that are not subject to careful scrutiny or employ the old and overused “hope and hype” approach that I find so personally problematic. The statistics in some of the stories aren’t well explained, leaving the uncritical reader to believing they have learned something that in fact is simply not true or may be borderline at best.

There is no question that social media is reworking the way we communicate and rewiring our brains in ways we never anticipated. What used to be the picture of mom and dad sitting down to read the newspaper or magazine and seeing “random” articles from time to time is now focused, concentrated, and offered to those who may be of like mind. The tweet or the headline on the email (if you still use email) is a couple of characters, then you click through to the abstract of the story, and then if you are really interested you may go to the full story. The short piece that pops up on the lock screen of your cellphone becomes your knowledge and your reality.

So how does cancer — especially cancer control — fit into this?

Truth be told, those of us familiar with the research world want research to tell us what works and doesn’t. But social media moves much faster than research: What is here today may be gone or less popular tomorrow. Research on the other hand takes years to do, and sometimes more years to get published. Put in perspective, right about now we might be reading about how effective MySpace is in reaching people to get screened for colon cancer. That just doesn’t fly.

We certainly can’t ignore the reach of social media. The leverage that it offers is immense. If the public health folks can figure out how to use it we could change the world. But figuring that out is not easy. It requires understanding, it requires messaging, it requires measuring outcomes to be certain you have really made a difference. But think about it: If an advertiser can get a message in front of you based on your surfing habits in a matter of milliseconds after you click on a webpage, why can’t we get a healthy message to you at the same time?

One of the comments I heard last week was the question of whether the social media ecosystem can offer new ideas on how to pursue cancer control or is it an echo chamber of like minds. Can we harness social media to advance health and healthy behaviors? Can we use social media for example to reach our goals of screening 80% of the adults in the United States over age 50 and at average risk of colorectal cancer by 2018? Heck, maybe we should have a tweet chat and ask the world how to get the job done!

The world of social media is full of possibilities when it comes to improving health and particularly when it comes to cancer knowledge and awareness. The marketers have figured it out. They analyze reams of data and know how to target all of us who use the internet in its various forms. Why can’t we do the same?

There is little question that us “gray hairs” need to become a bit more aware of what we need to accomplish and how to get the job done if we are to have relevance in this strange new world of communication which — as one of the participants in the meeting pointed out — has only been about 30 years in the making. If we are successful, we can get to a point where people recognize “trusted” information that can impact their lives. We can message and remessage, keeping in mind that we must be relevant and informative.

The deck is no longer stacked against getting accurate information out to the public, information that can change health and change lives. The question is whether we are smart enough, flexible enough and inventive enough to take advantage of this genuinely huge opportunity.

J. Leonard Lichtenfeld is deputy chief medical officer, American Cancer Society. He blogs at Dr. Len’s Cancer Blog.

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  • http://www.mightycasey.com/ MightyCasey

    The above reveals a deep level of cluelessness.

    Obviously the good Dr. has never been part of a #bcsm tweetchat, or a #lcsm chat. There is MASSIVE peer-to-peer and clinician-to-community teaching and learning going on every day, just on Twitter. There are also countless Facebook pages and LinkedIn groups that allow for robust discussion of research, new treatments, CAM therapies, and survivorship. Just because the Doc doesn’t know about ‘em doesn’t mean they’re MIA.

    Catch a clue.

    • JR DNR

      I don’t understand your criticism.

      He didn’t say there wasn’t peer-to-peer or clinician-to-community contacts in social media. In fact he said the opposite, he highlighted those two groups (Survivors and Cancer Centers) as groups that ARE using social media.

      • http://www.mightycasey.com/ MightyCasey

        There is much more conversation going on re cancer (research, treatment, and more) than the traditional research community is aware of, leading to this line from the piece, “But social media moves much faster than research: What is here today may be gone or less popular tomorrow.” In the so-me cancer community, we see part of our mission as parsing research-ese for the wider cancer community. It’s a partnership, but the med-sci side of the equation hasn’t really taken advantage of the communication lines to/from the so-me cancer community. We’re listening to them (reading journal articles, attending conferences, and more) but they’re not really listening to us, other than in small pockets of awesome. Frustrating, really.

        • JR DNR

          See, I read this as “researches aren’t reaching out and using social media to communicate their research” rather than no one is discussing it.

          • http://www.mightycasey.com/ MightyCasey

            Siloed discussion. Not reaching out. Same diff in my view.