e-Patient Dave

Power to the Patient!

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Reprise: The healthcare waste pit is BIGGER than the fiscal cliff.

For my last post of the year, as word filters out that Washington still can’t fix “the cliff,” I’ll do something rare: repeat something from just a few days ago. This needs to sink in for everyone who wants to fix America’s medical costs:

The “fiscal cliff” is big, but America’s excess medical costs are 30% bigger.
(Not total costs – just the waste that needs to be trimmed.)

As we start 2013, think about that.
Think how much commitment and guidance
it will take to fix it.

Some providers are working really hard to improve effectiveness,
and some insurance companies are too.

Some aren’t.

A lot of people’s income depends
on keeping things the way they are.

During the change, how will we ensure
that families and the best workers in the system are protected
while inefficiencies are pruned?

Here’s this week’s post again, tweaked just a little:

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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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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”?)

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Great Robert Wood Johnson video “This Cost How Much?”

I’m always getting surprised by the vast resources out there that not only have I never seen, but nobody else has told me about, even when I write about something closely related. Latest example: this 7 minute video from last year on the need to publish prices of medical services.

(That’s my buddy and four-time cancer patient Jessie Gruman in the preview picture. The clarity of everything she says hides how deep her insights are: she’s a world-changer.)

I’ve blogged a lot about the problems patients face when they try to be responsible for health costs, so in a sense this video doesn’t contain anything new to my readers. BUT, this video existed a year ago, and I wish I’d known about it …. and there’s something about a well produced video that conveys the point effectively.

I could see this being used at the start of many sorts of health meetings.

This bit of awesomeness comes from the Robert Wood Johnson Foundation, of course. I feel like they’re the Smithsonian of research on improving health – so vast that nobody knows everything that’s in there. So I love it when I find something like this.

(Later I’ll post about the significance of how I found it.) <= Here’s that post.

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Who gets to say what’s patient-centered? (Hint: the one who’s IN the center)

This is an adaptation of a message I wrote last night to some friends who are participating this weekend in PCORI’s workshop this weekend.  I wish I could be there, but overseas travel was booked for today, months ago.  For newcomers I’ll say more at the bottom of this post, but first, my message to the participants.

PCORI’s charter – its very name – is to develop Patient Centered Outcomes. That raises the question:

Who gets to say what’s patient-centered? We should.

The scientific establishment won’t turn on a dime with this one patient weekend, so what COULD we persuade PCORI and the attending scientists about? My view:

To me the core question of the weekend is: Who gets to say what’s patient-centered? I say, it’s the one who’s in the center. Who else could possibly know if things are balanced around them?

So, I suggest: in any patient-centered outcomes project, patients should participate not just in selecting projects or goals/outcomes (from a scientist-generated menu), but in defining the goals, the desired outcomes, even what they’d like researchers to pursue.

This is a maturing of the patient’s role, and a shift in the researcher’s role to one of partnership rather than “doctor knows best.” The maturing seems to parallel how a kid grows up: [Read more…]

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OpenNotes: The results are in. GREAT news for patient engagement.

In the past year I’ve often mentioned the OpenNotes study. Results are in! This is copied from my post last night on e-patients.net:

Regular readers know that we’ve long anticipated the result of the OpenNotes project. Our first post about it was in June 2010:  “OpenNotes” project begins: what happens when patients can see the physician’s visit notes? It tied the issue all the way back to the birth of the Web, in 1994:

The opening anecdote of the e-patient white paper [20th page of this PDF; 23rd page in the Spanish edition] tells of a patient who impersonated a doctor in 1994, to get his hands on an article about an operation he was about to have. He got busted.

Two years later episode 139 of Seinfeld had something similar – Kramer impersonates a doctor to try to get Elaine’s medical record: (Click to watch it on YouTube; they won’t allow embedding on other sites.)

Now, the Robert Wood Johnson Foundation (RWJF) is funding a study called OpenNotes to explore taking it a big step further: what happens if patients can see, online, every last bit of what their doctors wrote?Do doctors get overwhelmed with questions? Do patients freak out when they read the ucky medical words that doctors write? Does the world go to hell in a handbasket, as some have worried aloud?

The results were released at 5:00 p.m. ET Monday, in a new article in the Annals of Internal Medicine. (See the OpenNotes website.) Co-lead authors Tom Delbanco MD and Jan Walker, RN, MBA shared a pre-release copy with e-patients.net. They describe the study’s intent: [Read more…]