e-Patient Dave

December 29, 2012 By e-Patient Dave 9 Comments

What “patient centered” means to me: a realization from Holland on the role of the patient in research

patients included badge

I’m sensing a number of things coming together, creating a new view of what’s possible and what’s changing in healthcare. I want to take a moment to present some background, then share the mind-pop that hit me yesterday while writing something. It clarified my shifting view of the role of the patient in medical research – no small subject!

Background: different views of the role of the patient

As regular readers know, patient engagement got a big boost in April 2011, when I was invited to speak at TEDx Maastricht in Holland. My talk there continues to be in the top half of most viewed TED Talks of all time – an enormous boost to any cause.

Well, it’s no accident that it happened there. Organized by my now-friend @LucienEngelen, it was the first in a series of conferences he now calls “the Future of Health,” and for him it’s all about the patients – so much so that it was the first conference I know of where the first speaker announced (a year in advance) was a patient.

That’s an unconventional way to announce a new conference in medicine – and that was two years ago. He’s so patient-centered that a year later he announced he’d no longer attend or even accept speaking invitations to conferences that don’t actively support patient participation. He announced the Patients Included badge you see above. In his TEDxMaastricht talk this year he mentioned his parents’ deaths from cancer and his thoughts about his own odds. Describing the badge, he cites leaders like Gunther Eysenbach, Denise Silber and Larry Chu whose events do include patients.

TEDMED pill warning graphic

His university’s med school mission is “The patient as partner.” This touches, massively, on the TEDMED 2013 Great Challenge, Role of the Patient. TEDMED has tended to think of it in terms of whether patients follow orders: the signature graphic for this challenge (right) is a blow-up of warning labels on a pill bottle! Really, TEDMED?? This signifies the role of the patient?

And in the crowdsourced discussion, question 2 was “Is there a conflict between empowering patients and honoring the expertise and authority of medical professionals?” I have bigger possibilities in mind than whether patients heed warnings and honor authority.:-)

Taking it to the world of research

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December 28, 2012 By e-Patient Dave 3 Comments

The healthcare waste pit is bigger than the fiscal cliff.

Two weeks ago I talked about the magnitude of America’s $750 billion of unnecessary spending (per the Institute of Medicine). I put it this way:

If Intel, Microsoft, Apple, GM, IBM, Ford, Chrysler and Dell all went out of business, it still wouldn’t add up to that much.

I found another way to comprehend it. Hold onto your hat: $750 billion is bigger than the whole Fiscal Cliff we’re so scared about.

Yes, way bigger than that cliff in the news – the fiscal cliff that’s so big Grover Norquist caved in on his tax pledge, so big it embarrassed Speaker Boehner when he STILL couldn’t rally his troops – that cliff is “only” $560 billion, according to Wikipedia as of today.

I do amateur arithmetic :-) so I was quickly able to calculate that $750 billion is 30% bigger than $560 billion – even without a calculator!:-)

$560 billion + 30% (another $168 billion) = $728 billion.
(Okay, so that’s still shy of the $750b. My point stands.)

Our august leaders Norquist, Boehner and Obama speak of the Fiscal Cliff in desperate terms – but I don’t hear anyone speaking with the same urgency about the healthcare waste pit. But it’s going to hit us all, so you and I – all of us who have a stake in the future of healthcare – ought to be thinking what we’ll do in the coming years as this industry rationalizes to a saner spending level.

The changes will be substantial. As I said in the earlier post, we must detect and protect the good work of the best providers. And above all as fights unfold over the shrinking ocean of money, we must ensure that families who need care are indeed taken care of.
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(While we’re at it, recall this 2009 post: I’m sick of hearing Washington talk about savings “over ten years” … how are we supposed to make sensible judgements if a $5 billion saving (a drop in this bucket) is inflated to “$50 billion over ten years”?)

December 20, 2012 By e-Patient Dave 1 Comment

THAT’s what empowerment looks like.

I’ve long said that the feminist movement has strong parallels with the patient empowerment movement. Both involve people who perhaps at first didn’t feel mistreated (though some did) but who went through an awakening – “consciousness raising,” we called it in the Sixties, started to speak up, and discovered how it feels.

There was a great example today in the New York Times: Mormon Women Set Out to Take a Stand, in Pants. As I said on Twitter, “A long time feminist, I’m tickled to see Mormon women starting the process – by wearing pants to church. Some backlash.” The lede:
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December 14, 2012 By e-Patient Dave 15 Comments

Best Care at Lower Cost: As the crunch hits, will the best survive?

Update 12/16: comments below this post have added more detail and documentation.

On one level this is a happy post. On another level, it’s a storm warning.

The happy part:

Of all the amazing, inspiring, humbling things that have happened in this three year adventure, one of the best is being invited to participate in discussions with professional societies I respect. For instance, twice this year I’ve written for the SGIM Forum, published by the Society of General Internal Medicine. Real medical leaders are actively listening for the patient’s perspective on many aspects of the challenges facing health and care, especially in America.

For the current issue (December 2012 – click image at left) I was invited to write a post-election perspective for their Health Policy Corner on the outlook as reform rolls out. The angle I chose was to ask, as the new rules unfold and the business of medicine changes, will the best providers be protected?

It was a riff on the Institute of Medicine’s new report, Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. The most-quoted item in that report is that we have $750 billion of excess spending in American healthcare.

And that’s a problem. A big one.

The storm warning:

$750 billion is an incomprehensible number; it’s impossible to imagine how much financial pain there will be as we work to fix it. So I put it this way: if Intel, Microsoft, Apple, GM, IBM, Ford, Chrysler and Dell all went out of business, it still wouldn’t add up to that much.

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December 8, 2012 By e-Patient Dave 8 Comments

Register YOUR voice on The Role of the Patient: take this truly interactive survey

TEDMED 2013 Great Challenges

As I’ve blogged before (here and on e-patients.net), I’m one of the advocates (the Challenge Team) for this year’s TEDMED “Great Challenges” program, co-sponsored by the Robert Wood Johnson Foundation – specifically, of course, The Role of the Patient!

They asked us (the team) to answer five questions. (The original list is at bottom.) I haven’t yet – you can see the other team members’ responses here – for two reasons: I was immersed in my travel and events season, and (probably more importantly) something didn’t sit quite right with me. I figured it out:

It’s upside down to ask us some pre-selected questions – that’s precisely getting “the role of the patient” wrong. So I thought: let’s ask the crowd! Ask the internet what they think the role of the patient is and what it should/could be.

I gave the questions to my friends at Traitwise (see earlier post Engage, Participate, Enjoy!) Traitwise is an interactive, self-adjusting survey tool that responds to user questions. (I have no stake in the company; I just love the idea, because it harnesses the crowd and lets you discover thoughts instead of trying to guess them.)

You don’t just answer the questions – you can comment on them (including suggesting changes), and you can propose questions of your own. And those questions become part of the survey for future respondents. There’s more discussion below, but here’s the survey – dive in!
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December 3, 2012 By e-Patient Dave 10 Comments

From now on for me, it’s health and care

Health & Care signature

This post became a chapter in my 2013 book Let Patients Help: A Patient Engagement Handbook.

Every year in this season I reflect and renew, emerging in January with new views. This year the first conclusion arrived early: I’m changing a key part of my language. From now on for me it’s not “healthcare,” it’s “health and care.”

Why? Because I’m increasingly seeing that it’s incomplete to look at transforming medicine by just talking about the care part – the part that kicks in when something goes wrong. All of us – patients and providers and insurance and government and industry and everyone – need to be thinking about health, every time we approach a problem with the health care system.

I know I’m not the first to say this, but as a marketing slogans guy (“Let Patients Help,” “gimme my damn data” etc), I’m keenly aware of the power of handy language. Everything I explained above can be said over and over, but it doesn’t fit easily into everyday discourse. “Health and care” is an easy plug-in replacement for the usual “health care.” And that boosts the odds people will use the new wording.

And language defines our thinking.

The implications for patient engagement are clear: it’s not sufficient to get engaged (to get it in gear, to get activated) only when sickness hits. My view from now on is, if you wanna be an e-patient, it starts with holding up your end of the bargain before you get sick.

So for 2013, let’s broaden our scope: the focus of our work should be “health and care.”
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One more thing: I like the word “care” – it’s patient-centered. In my life getting doctored and nursed, I’ve had the experience of being cared for, and I’ve had the experience of just being treated, without care. When I’m in trouble, what I want – what we should all shop and ask for – is great treatment delivered in a caring way.