This is the latest in the Speaker Academy series, which started with this post seven weeks ago. It’s been much delayed by family and summer – all good! Before I resume here’s a blast from the past. Turns out I tried to do something similar back then.
I recently rediscovered this on my original blog, “The New Life of e-Patient Dave,” dated March 9, 2011. It had been 18 months since I’d had a full-time job, a year since I’d had even a part-time paycheck, and ten months since my first paid speaking engagement (May 2010 at the ICSI/IHI Colloquium).
The Past Events section of my Schedule page shows how many events I attended and spoke at, unpaid, before I started getting paid. That’s because back then hardly anyone saw value in a patient voice; in those days it was considered a favor to a patient to even listen to one. Some paid for travel costs, but that’s all. I’d been to forty events without a penny of pay.
Today things are different but we have much work to do. That’s a large part of the cause of this series.
This post mentions that we need a Patient Speakers Bureau. The website SpeakerLink is a start but it’s very young and it’s just a place for listings – it’s not a speaker’s bureau.
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“Building a career as a public patient” (March 2011)
Two years ago, when I was just starting to build a career in public speaking, I was constantly stymied by the fact that nobody wanted to pay for patients to speak – and, at least as importantly, if a conference organizerdid want a patient speaker, they had nowhere to turn. I posted A Call for a Patients Speakers Bureau. Excerpt:
We need to create a speakers bureau that lists informed patients who are available to participate in conferences and other speaking engagements. I think this idea was first suggested to me by the wonderful Ted Eytan MD. We need infrastructure (a place to host the list) and funding for the speakers.
Everyone’s talking about creating a new world of healthcare that’s more patient-centered or patient-oriented. Actually, in its fullest realization, this will be participatory medicine. (See the many posts on the e-patient blog.)
But how can we do that if patients aren’t at the table as this new world is thought out?
The situation is getting better, but we still don’t have that bureau. Nor do we have a pathway for patients to follow if they’d like to develop a career – or at least a bit of income – out of their commitment to helping improve healthcare. So I’d like to start discussing that here.
Caveat: I have no idea where this will lead. I created my own speaking career with no plan, and sometimes it’s been great and sometimes it’s driven me crazy. This is not “Patient Speaking For Dummies” – this is “What can we figure out together that will be helpful?”
I’ve been wanting to do this for some time, but I was finally prompted by separate notes by Twitter friends Erin Breedlove (@ErinRBreedlove) and Ilene Brenner (@IRB123). Ilene wrote:
Dave, I know someone who was injured as a professional dancer, paralyzed, and through arduous physical therapy regained her ability to walk–even dance!
However, during the course of her recovery, she discovered pilates and has worked to help others with chronic pain, as she was helped. I think she is a true inspiration, and with her excellent stage presence and speaking ability, I know she would make a fantastic speaker. I think she could inspire the many people who suffer traumatic injuries, and who live with chronic injuries.
Do you have any advice for her, or others like her, so they can get out there and speak to people?
Answer: no, but let’s start. Here’s what I did. This is no guarantee of anything. I’m just offering what I have. I was a good public speaker before healthcare, and I was a high tech marketing guy so I know something about understanding your audience, understanding their concerns and what motivates them, and speaking in a way that they (not I, not you) will find valuable. With that as background, here’s what I did, rephrased as advice to a patient starting in the same place.
- Figure out what you have to say that will be of value to someone. Having a good story is one thing, having a terrifying sad story is another thing, but do you have anything to say that will change anyone’s ability to do their job? Or change their outlook on life? If you don’t, you need to ask, what value would you be bringing to a conference? (You might be, but you better think about it.)
- Figure out what conferences would be interested in that message. Ask around: ask your doctors, your hospital administrators, etc. This can be hard work. Do it.
- Develop your speaking skills. If you want to be paid to speak, you have to be worth someone getting out their checkbook. Don’t let this stop you from trying; you need to gain experience.
- Create a website or a Facebook Page where you can post things. I’m geekier than a lot of people so mine is fancier than most (www.epatientdave.com
) but yours doesn’t have to be. Facebook is a lot easier. It may be seen as less professional, but it’s a place to start. - Learn to be competent at PowerPoint or Prezi.com or Apple’s Keynote, the most popular presentation software. In later posts I’ll discuss this more, if you want.
- Expect to be paid little or nothing at first, until you’ve proven your value.
- When you want to get serious, write a book. It doesn’t have to be fancy, it can just be an e-book or a PDF, but you have to be able to say “Author of ….”
That’s it for now – I know it’s incomplete – more later. Discuss. Ask questions. To get updates, subscribe to this blog (top right).
Next in the series: #8: My way’s not the only way, but speaking skills matter.
Thanks for this advice Dave. I have been speaking in a variety of forums about MRSA/HAIs and Patient engagement. Some of my audiences have been tiny and some quite large (over 800 at the Maine Quality Counts annual event). Sometimes I am part of a panel and sometimes I am solo. I prefer being part of a co presentation.
I have never asked for a speakers fee, but I do expect expenses covered. Recently, I was asked to be part of a 3 person panel presentation by a for-profit medical think tank organization. It was going to involve a 4.5 hour (9 hours round trip) drive from my home with a 6 hour conference in between, so I requested expenses covered for an overnight hotel stay.
Just last week they cancelled the presentation…just bumped it from the agenda! When asked if it was because the “consumer (that would be me)” asked for a night in a hotel, they said yes. The other 2 panelists lived closer and would travel to and from in the same day.
This was a first for me, and it will be a last. I will ask immediately, right up front, if all reasonable expenses are covered. If the answer “no”, I will refuse.
I am actually happy to donate my time, my experience, my work and right now a lot of my LIFE to this work, but I cannot and will not donate my family’s money. I did that for the first year and a half of my advocacy and it took a big bite out of our personal finances. I have learned a lot since then…….some of it from you! Thanks Dave.
Kathy, I’d appreciate it if you’d name the for-profit think tank – if you’re not comfortable outing them here, then send me a private note.
As I said in Prices must have integrity, “honor doesn’t feed the kids; honor doesn’t pay the rent.” And as I said in A Turning Point for Patient Voices,
As long as they can get patient voices for free, they will; that’s natural. As I’ve said, it takes time to change things. But as YOU said, it’s just not fair for you to donate your family finances (as well as your time) to an organization.
This is truly one of the core dysfunctions of all the decades of attempts to fix medicine. Tons of people making a lot of money selling advice, and too often, The Ultimate Stakeholder is nowhere in sight. As Dr. Phil would say, “How’s that workin’ out for ya??”
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Note: in all those 40 events before I got income, never once did I pay my own travel expenses. Sometimes I had to do it on a shoestring: people offered me their guest room, I finagled special deals on travel to shave costs, but I never paid it myself. I couldn’t. (But in a couple of cases I did get “paid” with videos of my talks, which I posted online.)
One way or another, do let me know who that for-profit was, who was happy to display the consumer voice to their audience as long as the cost was $0.00.
p.s. Re driving – did they offer to reimburse for mileage?
The standard rate for auto mileage this year, per the IRS, is 56.5 cents per mile. So if your 9 hours of driving was 500 miles, they’d owe you $282.50 for auto expense, in addition to the hotel.
That’s to cover gas, oil, tire use, depreciation on the car, etc. etc. It’s what employees and contractors are paid, and it’s what anyone decent will reimburse anyone who’s asked to come somewhere.
Of course, they’re not legally required to. If they ask someone to come at no cost, and the person says yes, that’s up to them. I just think people should be aware that reimbursement is standard business practice. If they decide “That’s okay, I’ll donate $282 of auto expense too,” that’s up to them, as long as they’re aware.
Oh yeah, I had an “offer” like that from a patient symposium in Texas. They wanted me t o speak for free, because their previous speakers were perfectly willing to do so. I am not that desperate for a chance to get on the stage. I can speak for free right here in New Jersey, without getting on a plane and losing paid opportunities, time working on a book, speech, or song, or quality time with my husband. I was really upset by them “insulting” me by offering me zero pay, until someone pointed out it wasn’t personal- it was just what they were accustomed to getting. Well, this isn’t my first rodeo. I’ve been performing for 18 years, and speaking for 3, and I have a published book. I’ll choose to work with those who see the value in what I have to say, and the impact I can make.