Top Ten Tips for Effective Advocacy in the Age of Slactivism

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I had the pleasure of being the public affairs world on the agency side for about 15 years, have also done so in the private sector for a non U.S. company and have also done two stints inside of the federal government.  So for eight (or often, more) hours per day, I would think of new and interesting ways to move along the policy, regulatory or legislative agendas hundreds of times.  Online or offline.  Facebook or face-to-face.  From the sender point of view or the receiver point of view.  Since the mid 1990s.

In many ways, I suppose that I was lucky when I was doing grassroots and advocacy work, because “back in the day” [insert Grandpa Simpson voice], our goal was to get advocates to actually DO something.   We got addresses, phone numbers and email addresses.  And we used them.  We organized.  We filled up buses. We got stuff done.  Sometimes, we won, and more often, we lost.  But we got people to get skin in the game.

The Golden Goose for advocacy: federal dollars

I am treading carefully here because this post, like all others that I have written since I started blogging ten years ago express my opinions and mine alone (God, I get tired of saying that.  And if you have any questions, pop over to my disclaimer page).

Let’s use the current example that I know best, medical research funding.  It begins in Congress with the appropriations process. Most federal funding comes from the Appropriations Committees.   These are the members of the Appropriations Committees in the House and the Senate. THESE people matter because they are the ones who have a say in how federal money gets spent. So unless your congressional representatives are on these lists, your time and energy are best spent elsewhere.

Before partisan bickering was in vogue on Capitol Hill, things actually got done. There was a schedule to getting appropriations bills done.  If and when you DO build a relationship with a Hill staffer to a Member on an Appropriations Committee, good advocates get an idea of the legislative schedule. Knowing WHEN to act is sometimes more important than knowing what to do.  When will a bill be introduced? When does the real budget planning process begin? If a staffer has his head buried in a military spending bill, you are not going to get her attention for medical research funding – in that moment. Forget your awareness month and the Hill Day that YOU schedule. You have to know when Congress is actually taking action on what matters to you.

And consider the following from someone who has been on both sides of the federal governm.nt fence and worked in online and offline advocacy.

Ten tips for how to be an effective advocate

  1. Hill Days are great if you want a trip to Washington, DC, but unless your representative is on an Appropriations Committee or best pals with one, you are often wasting your time.  You get a grab and grin and you get shown the door.
  2. Your relationship with the Hill staffers (yes, harried 24 year-old) is your best key in the door to know if, when and how to get noticed. This is art and science; you are not a professional lobbyist, so you need to figure out the balance between passion and reality. Oh, and by the way, you are one in about 100 people who will contact that staffer on any given day, wanting something.  Know that.
  3. The survey is a little dated, but that same Hill Staffer thinks that YOU are vastly more influential than the slick-haired lobbyist.
  4. Forming a relationship with that Hill Staffer means one thing: giving her the information that she needs that will be of value to her boss. NOT the information that you think is important.  And if you want the point of view of that Capitol Hill staffer, read this.
  5. In additional to personal relationships with Hill staff, if you want to get the attention of an Appropriations Committee member and are on a shoestring budget, pitch a compelling, personal story to the Member’s local or most influential paper. The now-retiring Barbara Mikulski of Maryland’s home paper is the Baltimore Sun. You can be darned sure that it gets scanned every day for stories that may interest the Senator. It costs nothing to pitch a reporter.
  6. Stop infighting. People usually become medical research advocates because of a personal loss, and this makes people wildly passionate – too passionate. Trust me, I get it. But there is a time for passion and a time for steel-eyed logic. But guess what? There is way too much bickering and agenda setting. What if each and every last one banded together, with a united budget, ask and agenda? And actually worked with the people who decided how the money got spent?  Nirvana.
  7. The people in the federal government agencies are not the enemy. Holding rallies, protests and other events to change the way that they “see” things is a waste of time. FDA, NIH or any other alphabet soup agency and others want funding for different types of diseases or medicines as much as we do. They want enormous budgets too. They want to write big, fat checks to researchers to do amazing things. But they don’t get to choose how much money they get. That comes from Congress.  So try working with them.  They want the same thing.
  8. Collaboration will bring about change. Combine the two items above and imagine the immense power of working together across advocacy groups, Congress and the federal government. Imagine the possibilities of getting everyone on the same page, moving in the same direction, aiming for the same goal.
  9. Stop with the Hashtag campaigns. This could be a whole different post, but understand the power – and limits – of social media. 100,000 uses of a hashtag is not going to get you anywhere. 3,000 shares of your loved one, while tender, is not going to influence what you want: to increase funding for disease-related research.   These do not impact Capitol Hill, Pharma nor other federal institutions. Think of how AIDS funding got done in the 1980s: people showed up, protested, occupied and demanded attention. Asking for Likes and re-tweets makes people lazy and ineffective. Sorry, but that’s the way it is.
  10. Beware the Slactivist.   This is closely related to the prior point, but what many advocacy groups have failed to grasp is the fact that you are CREATING SLACKTIVISTS.  Aslacktivist is someone who, with very little effort:
    • Comes across an interest cause or issue while surfing social media;
    • Likes, shares, re-tweets, pins or in some other way (and with one click) passes along the information, fulfilling her desire to feel good and worthy (five seconds); and
    • Immediately disengages from the “cause,” moving on to an animated .gif of a cat with a piece of string.

If you want “awareness,” count on slactivists.  If you want to MOVE THE NEEDLE, go back and read the Top Ten Tips above.

From "Confessions of a Capitol Hill Staffer"
From “Confessions of a Capitol Hill Staffer

The motivation behind writing this was that now that I am really getting to meet some wonderful, smart, passionate and intelligent advocates and people who really care, I want to help.  I want to help advocacy, particularly for medical research funding.  I want to help those in the federal government who toil for a fraction of what they could make in the private sector because they believe so passionately in the work that they do.   And I want to help the legislators understand how kicking the can down the road with omnibus bills and Continuing Resolutions makes it so much harder for everyone else.

So please.  Can’t we all just get along?

The views expressed in this post are mine and mine alone and do not reflect those of the National Cancer Institute, Kelly Government Services, nor any other corporate overlord for whom I have toiled.  Don’t believe me?  Read my disclaimer.


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An Awful Week on the Internet for Free Speech vs. Hate

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Reading the papers this morning, I was struck at how much the Internet has evolved from what I used to call “digital democracy” – a utopian place where people could express opinions and debate each other, into a machine that now also breeds way too much hatred, violence and trolling.

Hell, I have been trolled myself, from the Chairman Emeritus of Publicis, a global public relations firm, comparing me to a “right wing radio show host” for one of my blog posts that he did not agree with.  I’ve been taken on my one of the most popular bloggers online because I had the nerve to call out a “Cewebrity” for being a gas bag.   This other blogger was not content only criticize my post, he dedicated his own post to it – on his own blog (and I had met this guy in person before).  This is all to say that I get being trolled.

Trolls and Reddit

In an article in this morning’s Washington Post, former Reddit CEO Ellen Pao proclaimed that “the trolls are winning the battle for the Internet.”  As someone who has been on the front lines of the battle of one of the busier platforms for information exchange, believe me:  she knows what she is saying.  Among her quotes:

  • “Balancing free expression with privacy and the protection of participants has always been a challenge for open-content platforms on the Internet. But that balancing act is getting harder. The trolls are winning.”
  • “Fully 40 percent of online users have experienced bullying, harassment and intimidation, according to Pew Research. Some 70 percent of users between age 18 and 24 say they’ve been the target of harassers. Not surprisingly, women and minorities have it worst.”

And what I think is the most compelling statement of all in the article, Ms. Pao states:

The foundations of the Internet were laid on free expression, but the founders just did not understand how effective their creation would be for the coordination and amplification of harassing behavior.

Ellen Pao should know.  During her tenure at Reddit, she recognized the rise of hate speech and trolling and committed to removing revenge porn from their site, banned harassment of individuals, took down sections of the site that drew repeat harassers.

After doing what was right, guess what?  Reddit’s employees were personally targeted:

“Then, after making these policy changes to prevent and ban harassment, I, along with several colleagues, was targeted with harassing messages, attempts to post my private information online and death threats. These were attempts to demean, shame and scare us into silence.”

It’s not news that there are trolls and haters on the Internet.  I have fallen victim on this very blog, ironically, for writing about trolls.  But it ‘s not just that, this week.

The problem is the physical and psychological bloodlust and the social media platforms that cannot keep up with it.

Terrorism and their free dissemination platform

I have written about this very topic recently as well, but again, in another Washington Post article this morning, “Why the Islamic State leaves tech companies torn between free speech and security,” the authors discuss how social media platforms try to walk the line between free speech and removing what has become propaganda for groups like ISIS, particularly their gruesome videos and tweets, which then get shared widely and are nothing more than a PR machine for a groups of animals.  Among their recent social media activities:

  • An ISIS terrorist slaughtered 38 tourists at a Tunisian resort on June 26, 2015.  They took to Twitter to gloat, stating “It was a painful strike and a message stained with blood,” and also posted a warning “Let them wait for the glad tidings of what will harm them in the coming days, Allah permitting.”
  • On June 23, 2015, ISIS hopped on to YouTube and posted a video of men accused of cooperating with U.S.-coordinated airstrikes in Iraq and Syria – who were then incinerated in a car, drowned in a cage lowered into a swimming pool and decapitated by explosive necklaces looped around their necks.

What’s ironic is that the nation whose brilliant engineers invented the Internet is being cannibalized by the very democratic platforms that we have constructed:

As the Islamic State, also known as ISIS and ISIL, continues to hold large parts of Iraq and Syria and inspire terrorist attacks in more and more countries, it has come to rely upon U.S. social-media companies to summon fresh recruits to its cause, spread its propaganda and call for attacks, according to counterterrorism analysts.

My take

I have already gone on record as stating that social media companies, although while not perfect, can do a much better job of quickly identifying and eliminating hate-filled and evil propaganda.  I get that there are millions of tweets and YouTube posts each day, but as someone who used to work in communist China where all mentions of Tienanmen Square (June 6th) are automatically banned, the technology is there.

I am not suggesting that Reddit, YouTube nor Twitter become Stalinist states themselves when it comes to online freedom of speech.  But this just in, guys:  the online democratic utopia that was imagined has come to pass – and then it passed.  Now it provides a haven for online harassment, death threats, bullying and terrorism.  And apparently, the technology exists if a country of 1.3 billion people can pull it off.

Step up, Silicon Valley. If your lawyers can write 20 page Terms and Conditions documents that no one reads in which we give up many privacy aspects, Google can change its algorithm almost every day, and you employ some of the greatest minds in tech, you damn well can do something about online hatred.

The time to start is now. Stop the “coordination and amplification of harassing behavior.”

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Patients and the Power of Online Communities – Get on the Train

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I have been formulating this post in my head for some time, not quite having crystallized what I wanted to say.  Yesterday, that changed.  Sally James sent me a piece that she had written for the Health News Review, “When patients speak – some hear golden tones and others noise.”  It made me think.

The essence of the piece is, as Sally wrote, “how and where and when to register patient feedback in health care.”  It is a sub-component of what has been brewing in my head for some time:

  • How and when do we know that the value of online has resonated and has demonstrated impact within the medical community?
  • How does social media help connect patients with each other, caregivers, doctors and researchers?
  • Is it fair game to rate your doctor on a consumer opinion web site like Yelp?
  • What is the legitimate impact of online in the healthcare world?

Online matters: becoming your own healthcare advocate

I commented on Sally’s piece yesterday (again, my personal opinion – my standard disclaimer is at the bottom of this post and even has its own, shiny page) that in the Internet of Things era, those who use it wisely can become much more educated consumers and patients.  We can connect with others via social media and web sites and participate in these meaningful online communities, joining others that are impacted by the same illnesses.

We can gather information, get support and even research clinical trials that are sometimes still woefully undiscovered.  This enables us to ask in-depth questions and also better understand treatment options – in short, we can become more informed consumers.  Does this make us doctors?  No.  Can this outcome be measured?  Probably not.  But healthcare decisions are among the most important choices we make in our lives or on behalf of others, so why not be as informed as possible?

The debate: is online fair to doctors?

I was surprised to see that there is controversy surrounding patients reviewing the care that they receive from their doctors, mainly about those who comment on Yelp.  This prompted an Internet dust-up between Niam Yaraghi of the Center for Technology Innovation at the Brookings Institution and Casey Quinlan of Mighty Casey Media (more on their backgrounds in Sally’s piece).

Side note: these two also got together in a Google Hangout that is archived on YouTube, “Patient Reviews of Physicians: The Wisdom of the Crowd?

Again, I think in simple terms (I am a not a doctor,  I am a communicator who uses social media:  I literally wrote the book), but I am often exposed to scientists and healthcare professionals who get caught up in the Big Data Trap – one has to have hard core, unassailable data to prove a point in medicine and healthcare, particularly when it comes to online information and patient communities. I have been involved in online since 1997, and I can tell you that on many occasions, I have seen that online (particularly Twitter) can have a meaningful impact that is often dismissed for lack of scientific rigor.

Online matters – and there is data

Early adopters/advocates like Janet Freeman-Daly of the #LCSM (Lung Cancer Social Media) Twitter communities have done pioneering work in gathering cancer patients together, connected via one hashtag, to support each other, share resources and information, and even chat via Twitter on a bi-weekly basisThe Healthcare Hashtag Project and those behind it have done groundbreaking work at standardizing the use of hashtags in disease-specific communities, demonstrating the impact of Twitter to unite patient communities.  So when you create a virtual community where patients, caregivers or doctors can connect, ensure that they all gather in the right place and are discussing the same topic (the hashtag), amazing things can happen.

A turning point for me (and an aforementioned amazing moment) that demonstrated how Twitter does indeed matter to doctors (in this case, oncologists) took place recently during an #LCSM chat led by Dr. H. Jack West.  The chat was about lung cancer and immunotherapy, but what really caught my attention was that the topics discussed during the chat were fairly technical and scientific:

I followed the chat as did many others, but what amazed me was that I saw oncologists talking to oncologists, and this gave me hope (and a possible proof point) that scientists and doctors are increasingly seeing the value of using social media to communicate with patients and each other:

Online matters: another proof point

Physicians/social media thought leaders like Dr. Matthew Katz are doing incredible work to quantify the impact of Twitter communities formed around particular diseases and in one particular study, cancer.  Dr. Katz recently presented a poster the American Society of Clinical Oncology’s (ASCO’s) annual meeting entitled: “Disease Specific Hashtags for Online Communications About Cancer Care.”  I was not at ASCO, but I certainly saw this poster’s impact – on Twitter.  It was one of the first truly comprehensive efforts I have seen to prove the point that online patient communities matter.

Credit: Matthew S. Katz, MD (click here for a larger version)

What this all means to me

Within the last few weeks, I have seen much-needed proof points that online truly matters to healthcare, particularly in the cancer community.  I’ve seen that consumer review web sites can serve as a way to gather information about healthcare providers (and rile up some folks too).  I have seen new frontiers of vibrant, online communities that began with patients talking to patients and now include active discussions among  prominent physicians.

And finally, I have seen an amazing statistics-based analysis of cancer-specific hashtags presented at one of the most prestigious cancer meetings in the world.

In short? Yeah, online matters.  And the train has left the station.

The views expressed in this post are mine and mine alone and do not reflect those of the National Cancer Institute nor Kelly Government Services.  Sigh.

Image credit:

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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, 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?

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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.


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.


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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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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