EDITOR: This LinkedIn article is being republished three years later in testament to the fact that little to nothing has changed. Pay your damned patients and enough with the “but the exposure” bullshit.
July 9, 2019
ADVOCACY PRELUDE
Fellow advocates, nonprofit warriors, leaders and patient/caregiver community folks all around the world writ large —> Lend me your ears!
I invite you all — if you have not already done so — to rethink any opportunity that asks you to take time out of your already busy lives to speak, present, or contribute as talent to a private sector corporate event, health conference, or otherwise. This way, when they proudly and smugly disclose that they don't have a budget to compensate speakers, cannot do honorariums, and only cover bare travel expenses, you take a step back and pause.
Why?
Because you, your time, your talent, and your contribution to any for-profit event have a definitive and quantifiable dollar value that they do not care to recognize. Airfare and hotel stay should not be your acceptable minimum for giving so much of yourself so that they can profit. Demand more.
NOW ON TO THE SHOW
I want to take this time to reflect and opine further on the well-intended but oft-misguided private sector healthcare conference industry, specifically the ones I indirectly referred to in my prior article, Jargon and the Bastardization of "Patient".
You all know who you are, and so does everyone else that matters. We've all attended at least one, maybe sat on some panels, perhaps gave a Keynote speech, lent our social media influence to, and most assuredly listened to endless PPT presentations read verbatim to us directly from the slide by proffering professionals potentially in need of some stage presence.
Now, don't get me wrong. These events can be a refreshing respite if an overnight is involved, there are close colleagues in town, and the hotel—or a neighboring watering hole—has top-shelf bourbon with an epic mixologist tending bar.
However, with my patient advocacy fedora on, the sad truth is that, on average, these events are tokenism at their best and cravenly intentional verisimilitude at their worst.
Similar to that line from the original Jurassic Park where Jeff Goldblum's Ian Malcolm sardonically asks, "Are there any dinosaurs on your dinosaur tour?" the use of patients at these events is a more zoologically experimental attempt at authenticity than anything else.
Then—as discussed above—there's the whole BS issue about not compensating talent for their time and purported contribution. When your entire private sector business model is unapologetically driven by baseless exploitation, you will eventually reap what you sow.
It's one thing when you invite private sector middle management to your event to share some chatter about innovation. Those employees don't suffer lost wages, value, or time because participation and contribution is merely part of their job.
However, when it comes to either the sole proprietor, individual patient, patient advocate, or nonprofit executive, there is a presumption of equal value exchange. You give us a platform, and we give you a story, a yarn, a bleat while being fed zoo pellets in the form of travel reimbursement. How many times have we all heard, "But it's great exposure!"
"I can't wait to get free exposure by being exploited." SAID NO ONE EVER.
This is broken, stupid, and over.
Now, I plead guilty to being one of those uncompensated, exploited persons having worn all three hats of the patient, patient advocate, and nonprofit executive. I think I speak on behalf of many others when I say "So long and thanks for all the fish".
Nevertheless, the reaping is over, so let the sowing begin. Truth be told, it has already started and is well on its way to transform the sector forever eugenically.
I've always asked what the point of these conferences are. I get the networking stuff, but what do they ultimately accomplish? We all go back to our jobs and our lives after the closing session. There are rarely—if ever— any key takeaways, calls-to-action or homework assignments. Just boatloads of poorly designed business cards to sift through.
If the goal is pure capitalism, then I suppose the ecosystem is sustainable enough. If the goal is "progress," I would challenge what that means to the organizers as well as to the attendees. Does anyone have goals or expectations?
I question how often anything of tactical and tangible value come out of these events that translates down to practical and measurable impact for humans in need.
Frankly speaking, the more prominent conferences too often come across as just another gender-vapid Bro-fest competition of who is going to exit their startup with the biggest, shall we say, wallet. (Yeah - wallet.) IMHO, few, if any, are perceived positively by the advocacy sector and the patient community.
I should know.
I've been listening, asking, and straw polling for 13 years.
Granted the patient advocate may not ultimately their intended audience, but I believe our opinions matter since we're the ultimate end user when "shit happens" comes along and we become beholden to a marketplace driven by profit margins.
I would even go so far as to say that all of these events have accelerated and further exacerbated the bastardization of the word patient.
(Again, see past LinkedIn article – Jargon and the Bastardization of "Patient" )
In conclusion, the patient advocacy community has our eyes wide open because we're done doing your dirty work. Personally, I've got my eye on you HLTH. (Lest we all forget my 2018 Rotten Tomatoes review)
And that's the way it is.
Good day, LinkedIn.