Check this trailer for a new program, to be launched in January, produced by WNED, the PBS affiliate in Buffalo:

One of the challenges of starting a movement like this, especially a Society with little budget, is that you have to bootstrap, like any modern business: you take what you have, make something of it, make something of that, and build from there – always always listening for what others find valuable.

SPM member Regina Holliday’s magnificent “cinderblocks” conference Partnership with Patients was one superb example. Another is that as many of us have gone about our business, we’ve spread the word as we are able.

A lot of people we talk to are “getting it” – and sometimes that turns out to be someone with reach. And boy do I have news.

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I’m speaking tomorrow at Dignity Health‘s big physician symposium in Las Vegas. (They’re a big multi-state organization, formerly Catholic Healthcare West; @DignityHealth on Twitter.) Whenever possible I like to listen to other speakers to understand the issues conference organizers think are worth a slot on the agenda. Lots of good thinking at this event.

The current speaker is Deirdre Baggot, [almost] PhD, VP of The Camden Group. She opened with a terrific 90 second video – I can’t believe I’ve never seen it:

(The YouTube description says “This is reportedly footage from between segments that was not originally aired…”)

Think about this. Think about how rapidly things change.

As we work to create a new world of healthcare I think it behooves us to have compassion for people who had become excellent in their trades before THIS came along. And I’m heartened by the knowledge that almost all of us have figured out what that funny little “a in a circle” thing is. Change is possible.

This aired in 1994, the year when the first real browser (Mozilla) came out. And less than a year later, “Doc Tom” Ferguson published his amazing vision of what it meant for healthcare, which I described as “Steal These Slides.”

Bonus clip on teams

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Note addition, Nov. 28, at bottom.

A (ahem) friendly suggestion: let’s be explicit in what we ask for. Here’s a recent pet peeve :-) …

“Visible” is not “transparent.”

I keep hearing complaints about irresponsible patients as a leading cause of our cost problems. But, hospitals, insurance, and policy people: Don’t complain about our spending if you can’t tell us what it’ll cost before we make decisions. If you don’t know, you’re out of control – don’t blame patients for that.:-)

See, “visible” describes the thing we want to see. (Prices.) “Transparent” is an abstraction. It diverts attention from the prices, by focusing on the barrier.

If we can’t see prices, how can we control them?

If you go into a restaurant and the menu has no prices, how are you supposed to stick to a budget? Yet in last year’s Health Leaders reader survey, patient irresponsibility was listed in the top five causes of rising costs – and nowhere did they note that inability to see prices might be a factor.

Here’s the impact on ordinary citizens: If I mention “transparency” to people in my community, most have no idea what I mean. But when I say “We need to see what things cost – and nobody can tell us,” everybody does see what a problem that is.

Visible prices, please. Before we make our purchase decisions.

Added Nov. 28:

A few weeks later I was in a Mexican restaurant, and the menu illustrated this point, and posted on Facebook:

“Health policy lesson: this drinks menu has no prices – do you ask for ‘price transparency’? No, you ask for the prices! (Unless you’re a sucker.) Sometimes in healthcare we leave our common sense behind; easy to fix. Just realize it.”

This is the second in a new series on patient participation in guiding medical research.

Perry Cohen is a new friend and, I’m thrilled to announce, a new collaborator.

I learned about Perry during my MIT college reunion this June – my classmate Becky Donnellan heard about my work and said “You should meet Perry,” whom she’d met somewhere along the line. On my next trip to DC I met up with him, and indeed we hit it off.

But I’m not thrilled with the reason we need to collaborate: Perry has Parkinson’s Disease, and, as he puts it, “I’m losing my voice.”

That’s no small issue, because for sixteen years Perry has been a powerful and effective voice for the Parkinson’s patient perspective at the National Institutes of Health and the Institute of Medicine. In the progression of his disease, at present we can speak on the phone just fine, but the adrenaline of giving a speech – which he’s good at – is too much. In February he froze up, on stage, for two minutes, and had to be helped off.

So he’s asked me to help with his public speaking.

In this post I’ll introduce Perry, describe how we’ll be collaborating, and close with a specific example that shows how strongly he and I are aligned: an article he co-authored five years ago that blew my mind last week. (I mentioned it in Saturday’s post that began this series.)

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The plan

Starting a business is hard. Advancing a movement is hard. It’s been tiring. So last month, when I announced my first vacation in seven years I said:

For me “time off” means freedom from agenda. Don’t tell me to stay offline; that would be an agenda … I’ll read, I’ll sit on a beach (under an umbrella, for cancer prevention), we’ll tour the area …. Most of all, we’ll do whatever we feel like.

I said

We’re going to stay with friends, so it’s not like we’re splurging on a resort, or even a paid campground. On the other hand, the friends are overseas, which is sweet. :-)

I said

My assistant Linda will be monitoring my emails and will be able to reach me.

The outcome:

It worked.

I haven’t worn socks since June 22. Most days I wore sandals.

I haven’t worn long pants since June 20. Most days I wore swim trunks.

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