I am so very proud to be given the opportunity to be a semi regular on Shel Holtz‘s “For Immediate Release” podcast. Shel has been doing communications and social for many years and is someone who I consider to the about the smartest (and nicest) people on the planet. It is double the thrill when I get to talk about a topic that I have been talking about quite a bit on this blog: cancer communications.
So yesterday, I got to share a virtual microphone with two additional amazing people: Jennifer Stauss, a cancer advocate, entrepreneur, former broadcast journalist and PR whiz, and Doug Haslam, social media expert and a cancer advocate who for several years has done the Pan Mass Challenge TWO DAY bike ride to raise money for cancer research.
It’s not All Cancer All the Time though; we cover other topics too, like the Internet uproar over the now lower-case spelling of “internet” WHICH I REFUSE TO EVER USE.
So have a listen.
Here is the Ol’ Disclaimer
I said so verbally on the podcast, but this post, like every other darn word I have written or spoken in my career, does not necessarily reflect those of the National Cancer Institute or any other employer I have had since I got my first job at 15 years old. Heck, I even have my own disclaimer page (keeps the lawyers happy).
Before I headed off to my Hong Kong adventure, one of my favorite gigs was being a correspondent on what I still think is the best podcast out there: For Immediate Release, which is now the FIR Podcast Network.
So as you can imagine, it’s about ten times more fun when I get to be a panelist on an episode. With Neville Hobson’s departure, Shel Holtz changed up the format a bit, but still kept the incredibly entertaining and informative content. Today, I had the distinct pleasure
to be an FIR panelist again on today’s FIR #24. I was on with Paul Gillin, author and practitioner who specializes in social media for B2B companies, and my friend Ike Pigott, communication strategist, spokesman for Alabama Power and all-around smart guy.
In today’s podcast, we covered an amazingly wide variety of topics, including:
Cancer is, by far, the most challenging professional communications scenario I have ever faced. Communicating about Bernie Madoff was a piece of cake compared to cancer communications. Here’s why:
I learned this valuable lesson back in 2004 while in the chemo ward at Georgetown Lombardi Hospital with my mother, who was receiving treatment. For those of you who have been through it, you know that cancer treatment ultimately comes down to a lot of sitting around and waiting – and waiting. One day (while sitting around and waiting), I was engaged in conversation with a woman who was in one of the chemo chairs next to my mother and she told me one sentence that has stuck with me throughout my time doing cancer communications:
“Once the doctor says the words ‘You have cancer,’ you don’t hear anything else.”
I could go on about the need for a good a note-taking caregiver, but there are other resources for that. The point that I want to make is the difficulty of communicating about cancer. It’s complex, nuanced, can be confusing and misleading, yet there is more hope today than ever before. It’s hard.
The “C” word
For many people, in addition to freezing up when they hear the word “cancer,” there is still a stigma around simply having cancer, let alone talking about it. We are not that far removed from the days in which you hid grandma in the back room because of the shame of the disease, and heaven forbid you get something with embarrassing undertones, like Michael Douglas’s throat cancer or something like cervical or penile cancer.
Yet there are many people like my friends, Janet Freeman-Daily, who do a great job of helping to remove the stigma around cancer, in Janet’s case, lung cancer (making the point that not everyone who gets lung cancer smoked). There is also my friend Jennifer Stauss, described in the Huffington Post as, “The Inspiring Jennifer Windrum and the W.T.F. Campaign.” There is still much work to be done, however, to remove the stigma of simply having one normal cell decide it wants to become a cancer cell.
Are we at war?
I’m not sure that the imagery and well-intentioned metaphors surrounding the fight against cancer convey a meaning that presents where we are in medicine. For example, in 1971, then President Nixon (yeah, that guy) signed a bill marking the “War on Cancer.” Recently, Vice President Biden created a task force that is called the “Cancer Moonshot.” These were and are well intentioned and much needed metaphors, but as a communicator, I’m not sure that the words match the content. In a “war,” you have an enemy whom you are trying to kill. Is the enemy cancer cells? Who is the army? The government? Pharma? Academia? All three? In our first real Moonshot, we got to the moon and came back – several times. The lunar project was a success, and had a beginning, middle and an end. Cancer research and treatment does not.
There is no timeline for the “battle”
While many incredibly dedicated researchers (some of which I have the privilege of working with daily) do amazing work at cutting edge cancer treatment like immunotherapy, this also muddles the communications message, especially for those who have an advanced cancer. The Duke University glioblastoma vaccine story on “60 Minutes” last year presented some potentially good news, but it is so early on in the clinical trial process that we simply cannot know what will happen – and the sample size was only 22 patients. Does it present promise? Perhaps. Is it at a point at which it deserves national hype? No – because it’s simply too early in the process.
Most people don’t consume “complex”
The hard part about hearing things like “a billion dollars” and the word “cure” is that cancer is not that simple. It is highly complex. We have come to understand that cancer is a genetic disease. There are many types of cancer and although we make daily progress, it is a actually a series of insidious illnesses. You can knock back one type of cancer, but then the genes can mutate, become resistant to treatment, and you have to start all over again. And again.
People, especially those who are watching loved ones suffer through cancer, want a FIX NOW, a simple slogan, a simple answer, a magic bullet. Most people even give me a quizzical look when I tell them that cancer is not just one disease. I believe that the media (both traditional and social) have taught us to learn in sound bites and something as complex and hard to understand as cancer research, diagnosis and treatment(s) just doesn’t add up. “No blood for oil” is more easily remembered than a complicated argument as to why we evicted Saddam Hussein from Kuwait in 1991.
Bumper sticker statements can much more memorable than nuanced, complex answers, even if the issue is highly complex. This is a tremendous challenge for those of us who communicate about cancer-related issues.
In the United States, it takes an average of 12 years for an experimental drug to travel from the laboratory to your medicine cabinet. That is, if it makes it [emphasis mine].
Combine this statistic with the complexity of cancer and the fact that only five in 5,000 drugs that enter preclinical testing progress to human testing (and that’s not even approval). That’s nuanced, complex and for many people, very hard to understand for a highly emotional issue. The laboratory portion alone can take 10 years or more. Yet this is part of the “war.” And you certainly can’t fit that on a bumper sticker.
Why communicating about cancer is so hard
Combine fear, emotion, hype, desperation, nuance, highly complex, scientific language, and differences in each and every single patients’ type of cancer, and you’ll find that it is very, very difficult to communicate the journey “to a cure” that so many people long for.
Like millions of people all over the world, I want resources, simple answers and a to declare “victory” on a horrible disease kills far too many people. My own mother died in April 2004 of non small-cell lung cancer. She was there as I took my first breath, and I was there as she took her last. But as a now cancer communicator, I know that the reality is just not that simple. Bumper sticker slogans are effective, but they don’t match the reality of what really happens in cancer research and treatment.
We are making tremendous progress, but you don’t “cure” cancer with a bumper sticker.
I’ve said this many times, but I have worked in online communications essentially since its inception (19 years and counting). I have had more battles about why online matters than I could possibly count. I’ve gone to battle with IT (in the beginning, they wanted to own it), with Legal (they always want to own everything) and there is always an ongoing tension between communications and marketing folks because they want to own every piece of information that goes out. At some point, almost EVERYONE at wants to lay claim to a company’s social media presence.
But guess what? I have been at this for a long time, and I STILL see the need (almost weekly) to convince someone influential at my employer that social media matters. Yeah. That.
It’s a good thing that I have had these conversations hundreds of times (and even wrote a post all the way back in 2008 entitled “How to Sell Social Media to Your Dumb Ass Boss“), because I usually know what’s coming when I bring up creating a program for social media that will save time, money and further communications objectives.
Well, if you find yourself in those same shoes and getting The Look, I have updated my post of seven years ago with some new ideas that just might help you sell what should be innate to even the most conservative organizations:
Define your purpose. If you are planing to try to sell social media, you are the expert and the person to whom others will look to for information and persuasion. So have a really good reason why you think that your organization needs to use Facebook/Twitter/Instagram/SnapChat/YouTube to communicate more effectively. Know your stuff and be ready to start singing for your supper in an elevator, hallway or meeting. Know your talking points and your purpose.
Identify your business goals. You can just sell social to sell social. You will have a MUCH more likely favorable outcome if you carefully study the goals of your organization and then build you plan and your pitch around them. For example, if you work for an association whose goal it is to become more influential and gain members, come up with a plan that meets those goals. And sell it: “We can increase membership by X if we can identify and engage with people who share our interests. Social media will enable us to find and talk with them, but social interaction is what will bring them in.”
Set specific targets. The beauty of using social is that since Day 1, we have had a built-in advantage over those who want to use “traditional” media. So let’s say your communications budget is finite and someone proposes (shudder) a satellite media tour. That might be great, but how can you measure how many people watched it? You might know how many stations pulled it down, but then it’s s crapshoot to determine how many people actually were exposed to your messaging.When you attempt to quantify the impact of what you have done, you can say “Well, we have 5,000 new followers on Facebook, 200 on Twitter, an engagement rate well above the industry average and our YouTube videos have been viewed more than 200 times, totaling more than 18,000 minutes.” That is specific, measurable, and if there is a cost involved, enables you to actually calculate a cost per contact. Take that, Mrs. “We Really Should Use TV Ads More.”
Determine IF/where social fits in. Sometimes, social is a slam dunk. The other day, I was speaking with one of the most respected professors in the profession, Robert French of Auburn University (who has been teaching digital since 1999), and he told me of a large agency whose executives decided that they will not compete for any business that does not have a social media component. I think that this is smart, simply because if you are only using traditional and have an online audience to, it’s practically corporate malpractice NOT to use it.On the other hand, there actually ARE times in which it simply is not a fit. I remember once trying to come up with ways to reach farmers who were growing a certain crop. It did not take me long to determine that we were NOT going to be able to be successful using social media to sway them to our argument, so we let go and focused on other things. It’s not going to work every time – but it will more times than not.
Work with others to build your program. I am an unabashed “room stacker,” meaning that if I am going into a meeting and pitching an idea to a group of people who will give me a thumbs up or thumbs down on an idea, I make sure to reach out to the people who I trust beforehand, do a soft-sounding of my idea, put it in terms that benefits them, and hopefully ensure that I’ll have one more “yes” vote when it comes time to choose my approach. So think about your legal, communications, public relations, HR, public affairs and marketing colleagues and reach out to them before that all-important decision meeting.
Internal is important too. This item came to mind from a kerfuffle in 2012 when a young lady by the name of Cathryn Sloan wrote an article “Why Every Social Media Manager Should be Under 25” that set off an Internet firestorm that I waded in to and actually got to write a rebuttal on the very same same site. My response to her was this: “Dear NextGen: A Rebuttal From the Social Media Old Folks.” I pointed out that just because you are really good at Facebook does not mean that you will be successful at implementing it in a work setting. The example I use is that, just like stacking the room with supporters, you need to consistently and enthusiastically be a social media evangelist at your employer. Give brown bag lunches. Make people understand what it is that you are accomplishing. Back it up with benefits-oriented statements from the point of view of your organization. Think of yourself as someone who is thinking about running for President while building allies and accepting contributions. Work the crowd. Consistently. Knowing how to do this (or that it is even necessary) comes from years of experience – that’s why so many people got ticked off at what Cathryn Sloan wrote four years ago. It is much more likely that a seasoned communications person who happens to do social will know this, rather than someone who is god at Facebook but unable to articulate how this will further organizational objectives – and build a coalition of supporters.
Finally, the go-to point that is usually the deal-clincher is simply this: if your employer thinks that he/she can control what people are saying about your company, I guarantee you that this means that you have already lost control.
Hang in there guys. I’ve gotten The Look for almost two decades, and I keep going back for more.
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
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.
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.
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.
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.
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.
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.
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.
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.
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.