e-Patient Dave

Power to the Patient!

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Speaker Academy #7: “Building a career as a public patient” (March 2011)

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:

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Cheeseburger in Paradise … Lost

Parrothead specimen. Photo: ConchTV.com

Regular readers know that in May, just before giving a dinner speech, I learned that my younger brother Steve had died that day. I blogged about how I’d hardly known him, and my sister Suede (much closer to his age) replied about what a loss that was. Lots of you commented, here and on Facebook and email.

Separately, last week I posted that after years of wanting to be a Parrothead, I’m finally going to my first Jimmy Buffett concert Tuesday night.  I blogged about wanting to learn everything I could about Parrothead culture.

Suede wrote again – and guess who was a bigtime Parrothead:

Photo of him
Steve

You will have a blast. Too bad stevo isn’t around…he was a huge, huge buffett fan and knew every single piece of exactly what came with it. … he loved having all the back story and history on everything that got his attention, researched that tirelessly, then loved to tell all of it to anyone willing to listen. He knew all there is to know about jimmy buffett, I’m pretty sure … have a blast.

What do we lose when we don’t speak our wants to our families? And when we don’t listen to them? One of Buffett’s biggest songs is “Cheeseburger in Paradise” – and I thought, “Paradise Lost.” What I’d longed for (in silence) was under my nose, and now it’s gone.

Well Stevo, here’s to you – here’s to the tailgating we never shared. I’ll make it a good one and think of the elbows we never bent.

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Partnering WITH Patients: the IOM gets it right! (And I have a suggestion.)

IOM logoI often compare the “listen to patients” movement to other social movements from my delightfully long life. :-) One of the folk songs of my adolescent years was Bob Dylan’s “The times, they are a-changin’.”

And so they are.

Last fall the Institute of Medicine – the pinnacle of academic medicine – published a major report, Best Care at Lower Cost, which I’ve mentioned here repeatedly. Assembled by an absolutely blue-ribbon team, it has many quotable items, but my favorites is this: (Page S-11, page 34 of the PDF)

Patients Included badgePatient-Clinician Partnerships

Engaged, empowered patients – a learning health care system is anchored in patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.

Read that carefully. A lot of people who work in medicine don’t yet know about this report, and many who do haven’t yet had it sink in. A perfect example is Medicare, with their well-meaning paternalistic project “Partnership for Patients.” Note: it’s a partnership for patients, which is not something you’d say if you thought of patients as someone who’s on your team.

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Fins to the left: Parrothead advice needed!

I’m goin’ to a Jimmy Buffett show, and I need help stat!

Click image or here for an 8 minute video of live performances of “Fins” and “Son of a son of a sailor”:

Finz2Rt New Hampshire license plate
Yeah, that's a Fins license plate from my home state!

Five years ago this month, August 2008, it was a year since my final treatment. I’d beaten cancer and had spent a year wondering “What next? What will I do with my free replay in life??”

What had I always said I’d get around to, someday? In a flash it came to me: Parrothead!!

But there were obstacles. First was the cost of tickets – I was fresh from cancer and a house-sale disaster. Next was that every time I learned about a concert it was already sold out. Then were my three years of being a start-up, with no money for luxuries.

Last winter I realized I could afford it – but again, every time I found a concert it was sold out. What to do?? In early January I did what everyone modern does  – turned to social media. I asked Twitter:

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Speaker Academy #6: What could be said that would make any difference?

It took a month to get through the first five posts in this series, all based on the notes Randi Redmond Oster took from one thirty minute phone call. THAT’s getting value out of a conversation.

And that leads to this next point, which is short and simple. As you consider what to say to your audience, ask yourself this:

What could be said that would make any difference?

You may get frustrated by this – you may think people should think the way you do, or you may think people should want to hear what’s on your mind. You’re welcome to those feelings; heaven knows I’ve had them. But my point here is: if you want to make a difference in the world, by speaking, you better think about what could make a difference.

A lot of speeches I hear seem to have been written without wondering about that. Except for purely academic events, it’s not enough to recite facts. In academia it’s okay to say “I presented the facts – my work is done.” But if you’re advocating – if you want to change the world – that’s not enough. For instance:

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Speaker Academy #5: Knock it out of the park

Kent Bottles
Kent Bottles MD (from ConventionConnection.com)

If you’re new to this series of advice to speakers, read the initial post, and it’ll help if you follow the chain.

It’s been three weeks since this series went on hiatus. This post is the fourth to come from notes taken by Randi Redmond Oster. And this post springs from advice given to me by Kent Bottles MD, whom I mentioned yesterday on pricing. (That’s him speechifying, at right.)

In addition to counseling me about price integrity, Kent’s the one who taught me that it’s my responsibility to find out what’s on the organizer’s mind – which often involves helping with the exploration. As I said in #2, “two thirds of good speaking is good listening.”

The consultative approach

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