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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Peace, Groove and Tears: The Final Post

The is the last post in which I will ask you for a donation to help support Marty Knepp’s family.

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I struggled with the title of this post, as I have with many emotions over the last several days, but the word “final” still doesn’t seem quite right.  People with the soul the likes of Marty Knepp live on in those whom he touched, those will who I am sure show up in droves for the final goodbyes on Thursday and Friday.

Living on through the memories, laughter and tears of others says volumes about how an individual lived his or her life.  Here are a couple of wonderful quotes that were collected from Marty’s friends:

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and

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The most important quote you need to read, however, is below.  It’s from Marty’s sister-in-law, who hints at what the future holds for his family:Screen Shot 2015-05-06 at 3.07.46 PMIf you use words for a living like I do, I would encourage you to think about these:

Let’s keep the ball rolling and see if we can continue to bless Sandy and the kids and keep them in their house for a while before they have to make key decisions.”

I think that the average person can read into this that his family will face financial hardships in the coming months and years.  While grieving for their loving husband and dad.  You can help, and help right now by clicking this little, magical button:

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Moreover, at the bottom of this post, like the two that preceded it, are social media sharing buttons.  Facebook, Twitter, and LinkedIn all have an amplifying effect.  You share, others share, more share and the next thing you know, thousands have seen this post.  All you have to do is click to share these and enable your friends and family to be part of this.

So that’s it.  My final post.

But for Marty’s legacy, it will never be the end.

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Peace, Groove and Tears: Part II

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Marty in the Middle – Jazz Man Until the End

WarningOnce again, I am asking you for a donation. I am asking (no, begging) you join the so far 133 amazing, wonderful and caring people who have given, many anonymously, what they can afford to assuage a small portion of the pain and worries of Marty Knepp’s widow, children, parents and sister.

If you by some unfortunate circumstance unexpectedly left this earth leaving behind a grieving family in need of financial resources, what would you want others to do?  How would you want them to treat your family?  Don’t guess: pay it forward.

I cannot begin this post with anything less than a heartfelt and choked up “thank you” to everyone who not only shared this post on their own social media networks, but also for those who were kind enough to donate.

The stubborn Irishman in me, however, tells me that we are not close to being done yet.   The music will fade, so to speak, after Marty is laid to rest.  The days will pass.  Marty’s wife and children will have bills to face in a time of unimaginable grief, anger and confusion.  YOU can help lessen this simply by clicking this magical button:

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For those of you who knew and loved this amazing man, friend and father, think of the gift that you can give his family.  His internment is a scant four days away.

And since many have asked, here are the details:

Visitation

Thursday May 7, 2015
2:00pm-4:00pm
6:00pm-9:00pm at Beall Funeral Home
Click for Map and Directions

Funeral Mass

Friday May 8, 2015, 11:00am
Our Lady of the Fields Catholic Church, Millersville, Maryland
Click for Map and Directions

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This will probably be the most painful day that his wife, children parents, and sister will ever face in their lives.  But just imagine that even the smallest donations add up.  Imagine if Marty’s family could see that 200 people cared enough to care for his family?  Imagine the feeling inside of you for what YOU can do.

And once again, I truly understand that there are many people who are in tight financial situations themselves.  You can still help.  At the bottom of this post, like all others, are social media sharing buttons.  Use them to:

  • Share this or the donation page on Facebook and tag other friends – use the amplifying power of social media
  • Tweet it out
  • Like it on Facebook
  • Email it to others

And rise.

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Peace, Groove, Tears – and Paying It Forward

WarningI am asking you for a donation.  If you want to know why, read on.  If you want to help assuage strangers’ grief, read on.  If you want to pay it forward, read on.

As I sit at my keyboard and type these words, one of more than 500 posts I’ve written, I do so with a very heavy yet hopeful heart.  I hope that this becomes my most viewed post of all time.   And with your help, it will.

My heart is heavy because my friend, Marty Knepp, died of a sudden illness on Thursday, April 30th, leaving behind his wife, Sandy, their three children, Ellin, Daniel, and Aubry, as well as two shell-shocked parents whom I know well.  Marty also left behind a group of devastated friends, a river of tears yet an untold number of lives that he made better, just by being Marty.

The picture below has been making the rounds on social media because it encapsulates Marty’s essence:  he had a joy for life, music in his heart and a smile just for you, if he had seen you ten years ago or ten minutes ago.  That was Marty.

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What I am asking you to do is to donate whatever you can (to date, the largest amount has been $1,000 and the smallest, $5) to a fund so that Marty’s grieving family can put him to rest without additional financial worries to add to their mountain of grief.

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It’s popular now to talk about “paying it forward,” but in real life, I see less and less every day.  I am guilty of going through the day mindlessly like a robot myself, but what could be more meaningful than helping people whom you will never meet, yet are aware of their agony – and assuage at least one percent of their worries?  What could make you feel better – in this instant – than just by donating, showing the power of love, of mindfulness and of generosity?  Five dollars is not too little.

I also get that there are many people who are in tight financial situations themselves.  You can still help.  At the bottom of this post, like all others, are social media sharing buttons:  you Like this page, tweet it or otherwise use your social media networks to increase our reach for a heartbreakingly wonderful cause.

It’s not hard.  Just do it.

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Please.

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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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