The Intersection of Healthcare, Cancer and Twitter: It’s Here, Folks

I am an unabashed fan of The Simpsons and one of my favorite episodes is that in which Homer details all Screen Shot 2015-06-13 at 4.14.08 PMof the 188 jobs he held in the first 400 episodes.  Myself, I have worked in the public relations agency world for three agencies, as a college professor, I’ve had my own company, worked for the federal government, for a Chinese behemoth that became the largest IPO in history and as a contractor for a federal agency.  So yeah,  I sometimes wake up feeling professionally like Homer Simpson.

My current job at the National Cancer Institute has brought me more job satisfaction  than I think I’ve ever experienced.  Most days, I get to go home with the feeling that, since I am in communications, I did something to help connect patients, caregivers, researchers, doctors, clinicians and others.  Cancer rightfully scares the hell out of many people, and what I have experienced is that those who suffer from or care for those who have this terrible set of diseases crave is information.  

While many people still get information about cancer from sources like their doctors, cancer.gov or 1-800-4-CANCER, increasingly, people are turning to social media for information, support and resources.  Every day, I’ve tried to to do my best at helping to make people aware, on a large scale, of the cancer-related information available to them during my tenure at the NCI.

What I am proudest of though, is what started as a crazy idea and ended up being what Audun Utengen, of Symplur called “unprecendented.”  I knew for some time that Siddhartha Mukherjee‘s Pulitzer Prize-winning book, “The Emperor of All Maladies: A Biography of Cancer” would become a PBS documentary co-produced by Ken Burns and Barak Goodman.  It was a three night,  six hour very accurate portrayal of the book (March 30 – April 1, 2015), but one interwoven with compelling interviews, personal stories, triumph and tears.

My crazy idea

My whole train of thought began with what we could NOT do, and that was to miss the opportunity of a lifetime to capitalize on the fact that millions of Americans would be watching a program about the past and present of cancer research and treatment.  Millions of people were going to be focused on cancer.  As the nation’s engine that drives basic cancer research, we at NCI had to do something that would have an enormous and lasting impact on those impacted by cancer.  But what?

Big screen/small screen
Image: Courtesy of Wikimedia Commons

Live-tweeting #CancerFilm

Based upon the premise of marrying the “big screen/small screen” phenomenon for events like the Super Bowl or the Oscars (remember the Oreo cookie tweet during the 2013 Super Bowl power outage?), what if we could get people to watch the film, and cancer experts could simultaneously provide running commentary and information about cancer – as the facts or stories appeared on the film?  In essence, what if we could live-tweet one of the most important online events about cancer – EVER?  The hashtag, #CancerFilm had already been registered and was in use, and we were thinking big.

Then what?

I knew that NCI’s lone voice was not going to be enough to have the impact we craved.  Luckily, the National Cancer Institute has a vast network of cancer centers as well as an engaged group of advocates.  So we reached out to them and said, “What if we did this – but on a really big scale?”  Well, we were fortunate enough to live-tweet all three nights of Emperor with a group of 18 partners:  cancer centers, advocates,  clinicians and many, many more.

So what happened?

After a tremendous amount of planning, preparation, coordination, we had our plan in place.  When one of many possible cancer topics were mentioned during all three nights of Emperor, the NCI, our 18 partners and others were ready to provide the information in the moment in which it was mentioned.  For example, when the very popular topic of immunotherapy was mentioned, many experts provided links to additional resources in real-time:Screen Shot 2015-06-14 at 4.27.39 PMBut we still had the question:  if we all got together and a threw party, would anyone show up? Would people engage in an online conversation about cancer on Twitter while a compelling documentary was airing (across all U.S. time zones, each night beginning at 9:00 pm ET)?  With baited breath, each night I ran reports that were made possible by the Healthcare Hashtag Project, and based upon the tweets that I saw fly past on my Tweetdeck screen, I knew that we were on to something.  And I hoped that it would be BIG.

The results:

NCI, our partners and thousands and thousands of other Twitter users did, in fact, live-tweet using the #CancerFilm hashtag, providing information about the past and present of cancer treatment, but we couldn’t stop there.  So the day after the last night of the documentary, all of us in the partnership (and some new organizations and individuals) conducted a highly successful Twitter chat about what many believe is the future of cancer treatment: immunotherapy.

What I saw flying past my Tweetdeck screen during all three nights as well as the chat on the day after the last episode was people asked questions, engaging in dialogue, arguing and discussing.  And most importantly, that was made possible by the “big screen/small screen” connection.

There are two sets of results that I count.  The first one is quantitative.  Our social media experiment resulted in:

  • 443 million Twitter mentions in three and a half days;
  • 56,565 tweets;
  • 12,234 participants;
  • All three nights and during the chat, our lead Twitter account, @theNCI, was the #1 influencer according to the Healthcare Hashtag Project;
  • The NCI  and our partners drove the discussion that resulted in one out of every four tweets (more than 120 million mentions); and
  • People found value in the information we provided:  @theNCI saw more than 32,000 engagements (favorites, shares, clicks, video views, etc), indicating that we really were giving people the cancer information that they wanted, when they wanted it.

While the numbers are big, and even if one supposes that, as according to Twitter, only 2-5% of all tweets are actually seen, that is still means that people saw and reacted to between 8.8 and 22.5 MILLION tweets.

What really mattered

While the numbers were beyond our expectations, what really mattered is what we could not measure, the qualitative part:  somewhere, there was someone watching and tweeting who was battling cancer and craved information;  somewhere, someone recognized that clinical trials can be a first option, not a last option; someone read about the tragedy and promise of the past and present of battling this terrible disease; and somewhere, someone realized that if they were nearing the sunset of their own battle with cancer, they learned about palliative care  – and discovered that they had the right to choose how and where their cancer journey ended.

Take-aways

What prompted this blog post was an June 9 article in the highly respected Public Library of Science (PloS) blog by Sally James (‘Second Screen’ for Health Care Messaging: Looking for Lessons from #CancerFilm) in which others called the effort “unprecedented” and “an explosion of people talking about a disease.”  In the PLoS post, Sally wrote:

“Media relations expert Greg Matthews believes the social media explosion of #cancerfilm will inspire others to attempt to re-create it.  “Anyone who saw the impact that #cancerfilm had on the online health ecosystem is going to be building on that model – it was phenomenally successful.”

Those are wonderful words to read and the social media experiment, while a tremendous amount of work, collaboration and cooperation, was the most gratifying professional effort that I have ever undertaken.  And if it inspires others to re-create it, all the better.

So even after some amazing numbers, I still tried to focus on what is most important:  getting cancer-related information to those who need it most.  I hit the “reset” button on my job every day.  Innovation is needed because cancer doesn’t wait, so I don’t either.

Can we truly measure the most important impact, reaching people in a moment of need?  No way.  Did it happen?  I am certain of it.

That’s why I love what I get to do every day.

Mark

P.S.:  In case you have not read my disclaimer page on this site, my Twitter account nor any of the other places online where my words are littered, know that the views expressed in this post are mine and mine alone and do not represent those of the National Cancer Institute nor Kelly Government Services.

 

 

 

 

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Dear Mass Media and Social Media: Help Stop Terrorism

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There are way too many mornings when I awake to read another front-page article about an innocent person who is killed (now, often beheaded) by implacable, bloodthirsty terrorists.  These stories appear often in the online equivalent of above the fold (or for people who still buy papers, really above the fold).  This morning was no exception when I read about the beheading of Kenji Goto, a Japanese journalist.

From my own memories of September 11 to the “Je Suis Charlie” movement to these latest horrific videos, a thought occurred to me that stirred up memories from when I was a kid.   Growing up a baseball fan, the only games I got to watch were those broadcast on network television on Saturdays – the Game of the Week.  In the 1970s, it became in vogue to either streak across the field or run around like an idiot until you got tackled, hauled off and likely released a couple of hours later – so everyone could see you on network TV.  It still happens (see below), but the impact is largely confined to social media (this video has more than three million views):

 

In the 70s, the TV cameras used to follow these idiots, tracking them while they tried to elude either the police or stadium security and the announcers would often provide commentary.  Then, someone came up with a great idea:  STOP SHOWING THE IDIOTS.  By denying them what they wanted most – “exposure” on television, the craze eventually went away.

I have been around the media for a LONG time and know that in about every news room in America, the mantra of “if it bleeds, it leads” holds true.  The more gruesome the killing, violence, hostage situation, you name it, the more the editors salivate at the increase circulation numbers, eyeballs or TV ratings.  it’s true: newsrooms love this stuff.  If you don’t believe me, ask a reporter.  It gains eyeballs, clicks and readers.

Bloodthirsty animals like ISIS are now exploiting traditional and social media to boast and show off their latest atrocities, and at least the media that I read are more than happy to write prominent articles about it with pictures of some poor soul kneeling before someone in the last, humiliating moments of their lives. And yes, I showed  the image above, but to make a point.

There is an all-too-familiar pattern to what is happening today in the poorly named “war against terror.”  It goes like this:

  1. Sadistic, media-crazed barbarians kidnap an innocent civilian
  2. Said barbarians issue a picture or video, demand ransom and publicize their latest prize
  3. Media carries the story, along with quotes from said barbaric group
  4. Demands are not met or ransom is not paid
  5. Innocent person gets killed, often in bloodthirsty, dramatic fashion, such as a beheading
  6. Sadistic animals release a video and a statement that is carried VERBATIM by media outlets all over the world, becoming a megaphone for said barbarians
  7. Impotent world leaders express outrage.  Today’s statement from the Japanese government was “Japan strongly condemned the killing, saying an “atrocious act of terrorism” had been committed and that the country was “outraged by the horrific act.
  8. Fueled by world attention in mainstream and social media, sadistic, media-crazed barbarians prepare to re-feed the media beast that lives off of “if it bleeds, it leads.”
  9. Repeat.  Again, and again.

Don’t believe me?  How about Jerrold Post, director of the political psychology program at George Washington University?  He says:

“Terrorism is basically a media phenomenon,  You can look at it as a species of psychological warfare waged through the media. Which means that while we know terrorists influence the media, media coverage also influences terrorists.

Well, I don’t own guns.  I can’t drop bombs.  But I am pretty smart and have worked in communications since the late 1990s, and here’s my piece of unsolicited advice for the print, television, radio and social media decision makers:

STOP REPORTING ON OR POSTING TERRORIST CONTENT.

YouTube and Twitter have done their best to deny social media as a venue for these animals, but it’s difficult and this stuff goes viral – fast.  According to a September 2014 article, Forbes reports “With 100 hours of new footage uploaded every minute, YouTube says it doesn’t, and couldn’t, prescreen content, relying on users to flag violations.”  I get it.  These two platforms have the best of intentions, but are overloaded.

But I’m not done.

ABC, NBC, CBS, MSNBC, Fox News and others:  stop reporting on beheadings.  Major newspapers like my hometown Washington Post (on which I learned of the latest atrocity), deny the terrorists a cheap propaganda victory.  Online news outlets like the Huffington Post: think about what you can do to help win the poorly named “war on terror,” ignore the spike that you’ll see in web traffic and stop being their publicists.  

Does this apply to every act of terror?  Certainly not.  Events like what happened at Charlie Hebdo can and must be reported.  BUT – for those editors who make the “write or don’t write,” “report or don’t report” decisions on individual acts of terror accompanied by insane rants, ask yourselves an important question:

By reporting on acts of bloodthirsty violence, are you interested in helping terrorists get out their propaganda, or are you interested in making money?

It might seem complex, but it’s actually pretty damn simple.

Stop showing the idiot on the baseball field.  Go to commercial.  Deny the idiot/animal their platform.

And take away their power.

Image: Heavy.com

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The Cost of Doing Business Online: Trolls

Internet Trolls

There have been way too many instances of late in which online detractors or idiots (read: trolls) have shown up on my social media radar screen.  I envision many of them looking like Comic Book Guy from the Simpsons, but I continue to be amazed at how people can take legitimate social media activities and turn them into their own personal platforms for extraordinarily insensitive commentary.  Free speech?  Sure.  But exercising free speech still doesn’t excuse you from being a complete moron.

Example #1:  Season Affective Disorder Twitter Chat

An agency of the National Institutes of Health, the National Institute of Mental Health (NIMH), has conducted several Twitter chats, covering a wide variety of topics related to mental health.  I don’t have any scientific data to back it up, but I imagine that it’s hard for people to go on a highly public and visible platform like a Twitter chat, discuss their own mental illness or feelings of depression – and have their comments linked back to the personal profile.  It must be really hard.

On November 13, 2014, NIMH conducted a Twitter chat about Seasonal Affective Disorder (SAD) – good timing as the amount of light available in daytime hours in going down many places and SAD affects a lot of people, especially at this time of year.

As I’m working, I’m watching the chat out of the corner of my eye, when one particular tweet showed up – and told me that the trolls have arrived:

What?  Racist?  And what the hell are those pictures? I suppose that one could argue that the troll on the other end of the tweet may well have suffered from some form of mental illness, but then I saw another tweet:

As people were discussing how certain light boxes how shown to be very effective at helping those with Seasonal Affective Disorder, the troll posted this:

Not cool.  It then occurred to me that whomever was doing this was trolling a Twitter chat on mental illness – a tough topic for people to talk about, let alone in a highly public way.  To their credit, no one, especially those at NIMH engaged with this troll and he/she eventually went away.  I believe, however, that making light of mental illness during a social media event pretty much makes you a complete asshole.

Example #2:  New England Patriots and Twitter

November 13 must have been International Troll Day.  Ask the New England Patriots.

With a brand new Twitter account and in an attempt to quickly reach one million followers, their social media team created a clever way to attract people to their Twitter account and have people follow them – they created a Twitter bomb.  The Patriots’ social media team enabled people to enter certain text and said text would appear verbatim on the back of a Patriots’ jersey in the form of a tweet.   They were expecting people to enter their last names, a neat way to show your Patriots fever.  A very cool idea for whomever came up with it:

And that’s when it went wrong.  Very wrong.  As the Boston Globe wrote,

99.99 percent of their fandom who just wanted to share in their social media celebration. But it’s always that 0.01 percent that causes 100 percent of the problems.”

And that 0.01 percent did exactly that, creating a jersey using the “n word” made up of letters and numbers.  And unfortunately, it went viral.  A troll had gotten through the keyword filters that the Patriots set up (I am not going to post the tweet as not to give the person further exposure) and before the Patriots’ social media team could react, the post went viral (it was up for more than an hour, which is the only thing for which I would criticize the effort – you have GOT to have a warning system in place if you automate an effort like this).  After said hour, the tweet was taken down, but as I’ve said in the past, the Internet is forever and screen shots rule the day.

Trolls 1, New England Patriots, 0.

Much has been written about this mistake, so I won’t provide a lot of additional commentary.  My only point would be that if the Patriots were looking to go from zero to one million followers using an automated method (and they were going to sleep at some point), there is no way possible that humans could have prevented this.  Moreover, most of the social media accounts I manage have keyword filters as well, but the 0.01 percent of the trolls will always find a way to do 100 percent of the damage.  Thankfully, no one got fired. And the Patriots social media team quickly apologized:

Like the Globe writer, Bill Speros commented this was a mistake fed by clever trolls:

“If every person in America was fired after they made a mistake at work, our nation’s unemployment rate would be 99 percent by the end of next week.”

Agreed.

Where there is the Internet, there will always be trolls.  No matter how serious the subject, nor how insensitive the message, there will always be someone about .01 percent more clever and devious than a good social media team.

Does it mean we should stop?  No way.  I’ll keep doing Twitter chats, Google Hangouts and maintaining many social media properties – but I do so with the knowledge that on one particular day at one particular time, I’ll get trolled.

It’s the new normal, and the unfortunate cost of doing business online.

Image credit: Dr. Platypus, Flickr Commons

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My (Podcast) Roundtable Rants, Part Deux

Man yelling

Yesterday, I had the pleasure of doing yet another fun and sometimes cantankerous Media Bullseye Roundtable podcast with my good friend, Chip Griffin, CEO and founder of the Custom Scoop media empire.

Among the topical issues that we covered were:

Crazy, right?

Have a listen here, or:

Mark

Image: DieselDemon, via Flickr Commons

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The Damage Done to the Ferguson Debate by Slactivism

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Social media can do a lot of good.  It can connect people, spawn romance, spread news before even major outlets have it, or contribute to the overthrow of dictators.  And depending upon your point of view, have a serious financial impact for non-profit fundraising  (see Ice Bucket Challenge, although while sometimes annoying, has received $94.3 million in donations compared to $2.7 million during the same time period last year (July 29 to August 27).

But I have become increasingly dismayed by what I view to be the damage that irresponsible use of social media has caused over the last couple of weeks, principally the situation in Ferguson, Missouri.  In my mind, people have increasingly made their social media properties billboards for the latest poorly-Photoshopped picture of a candle that make you feel like you’re a total jerk if you don’t JOIN the cause and pass on the aforementioned picture of the candle.

For those of you unfamiliar with the term, “slactivism” is a combination of the words “slacker” and “activist.”  Wikipedia defines slactivism as:

The word is usually considered a pejorative term that describes “feel-good” measures, in support of an issue or social cause, that have little or no practical effect other than to make the person doing it take satisfaction from the feeling they have contributed.

So picture someone sitting on their couch, perusing Facebook or Twitter, Liking, Sharing a picture of a sick child on Facebook, or re-tweeting something just because, for example, it has a hashtag that describes a situation that they feel passionate about – like #Ferguson.  And doing nothing else, but reveling in that self-congratulatory glow that can come only from having make yourself feel good about being an activist without even leaving your couch.  Oh – and pass the Fritos, please.

The slactivists have taken over the interwebs over the last several weeks.  And it’s not helping.

#Ferguson

Over the last few weeks, #Ferguson has been a trending topic on Twitter and Facebook and has dominated the national news.  It’s a terrible situation and one that has yet to play out fully.

Why is slactivism a problem regarding Ferguson?

In order to make the situation better,  what we need is information, not uninformed opinion.  #Ferguson became a political statement.  “Hey, I hate the police/don’t hate the police, so I’m going to use #Ferguson in my tweet.”

Resolution in Ferguson will come from research, understanding, compassion and grasping the other person’s point of view, and right now, that ain’t happening.  Why?

Tony Haile is CEO of Chartbeat, a company that “…measure[s] what matters so you can take action when it matters.”  They gather data.  So I take Tony at his word on this.

In case you don’t want to investigate, trust me that most people don’t actually READ the articles or blog posts contained in the links that they share.  They read the headline, and whammo bammo, re-tweet done.   Slactivist pat on the back administered.  Back to the Fritos.  People are fanning the flames and passing along information based upon a hashtag or a few words in a tweet, and not on the more detailed information that often accompanies the link.

And in the process, this sort of slactivism can create a a trending topic on Twitter – making it possible for others to see the link and do the same.  And the situation becomes self-perpetuating.

Passing on #Ferguson without reading – and thinking about – the corresponding information is the offline equivalent of recommending a chiropractor to a friend based upon the name of the practice, without ever actually having visited the chiropractor.  But with much more serious consequences.

When people see a popular (or incendiary) hashtag, read a few words of a description in Twitter and then endorse the underlying content by re-tweeting it – this is slactivism accomplished.  And yes, “endorse.”  That’s why so many people like me are required by our employers to state that re-tweets do not equal endorsement.  Because that’s what people perceive.

Has there been some very good, compassionate discourse surrounding the situation in Ferguson?  Absolutely.  And I have read quite a bit of it.  And I have also been flamed on my Facebook page for expressing my views.  But where social media harms us is that it makes it so easy – SO TEMPTING –  to hit that “re-tweet,” Like or Share without even taking the time to even know the point of view or judging the credibility of the information that they are passing on.

At some point in this social media chain, people will read the information passed on via social media.  What  will this be?  What point of view will it present?  How will it help make things better (real activism), than clicking on something then moving on to see what’s new on Netflix (slactivism)?

The answer is that I sure don’t know.  But what I do know is that the noise to signal ratio around a topic like Ferguson can helped by people providing real-time, on the ground information using social media, but this can barely be one percent of instances.  The other 99% of the people are NOT there, and information that is being endorsed, shared and spread is not likely even be read by the person who is sharing it.

That’s sad.  That’s harmful.  And that is how social media is hurting – not helping – the situation in Ferguson.

Wanna feel good about yourself?  Be an activist.  Start a petition drive. Volunteer in a homeless shelter.  Want to be a couch potato, endorse  information that you haven’t even read, let alone considered?

Welcome to the wonderful world of slactivism.

Image: Peters Gadgets

 

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