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October 1, 2012 By e-Patient Dave 6 Comments

Perceptions creating reality: the scapegoat dynamic and the role of the patient

TEDMED Great Challenge: Role of the PatientThis post brings together several threads from the past year’s work. At the core is one of the Great Challenges for TEDMED 2013: The Role of the Patient. Roles exist in a context, and a new perspective on this context came to light today.
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Those who’ve seen me speak know I spend a lot of time thinking about the underlying structural issues that keep healthcare from evolving. In particular, leaders like Warner Slack MD have been saying since the 1970s that patients are the most under-used resource in healthcare.

But many in the profession can’t imagine that participatory medicine could be valid.

Why? Why do so many physicians, administrators and health policy people roll their eyes at the idea of patient as partner? (Many don’t, but many do.)

I don’t ask this as a whine, I ask it as an inquiry.

Paul Levy is the former CEO of my hospital, Beth Israel Deaconess Medical Center. He’s also the one who introduced me to Dr. Danny Sands, my famous primary physician, who practices at BIDMC, saying “You’ll probably like this guy.” Well, GOOOAAALLL!, as they say in soccer. Which Paul plays, coaches, and referees. (He’s skinny.)

Today on his blog Paul writes How a Team Degrades. It’s a tale of a Lean exercise his hospital used, which he connects to a recent soccer episode. And I see a parallel with the role of the patient.

The Lean exercise:

A group of colleagues sat around a table and were given a problem to solve.  Each person wore a hat with a label that could be seen by everyone at the table, except the person wearing the hat.  The label might say “whines,” “creative,” “combative,” “unintelligent,” or some other characteristic.

Strikingly, within just a few minutes, people at the table began to treat each person as though the assigned characteristic were true.

[Read more…]

Filed Under: cost cutting edition, decision making, Participatory Medicine, Uncategorized 6 Comments

September 28, 2012 By e-Patient Dave 1 Comment

Links for Cooper and Partners “Work Well 2012”

I’m speaking today at a relatively new type of event for me – worksite wellness. (I often speak at conferences that include employers, and in May I spoke at the Rich Products company health fair, but this is the first event that’s a seminar for HR and wellness executives about worksite wellness.) The host is Cooper and Partners, a company whose professional content and image are amazing given their new-company status. Keep an eye on these folks – they know what they’re doing.

Here are some sites and resources I’m mentioning.

ePatientDave.com (This website – subscribe free – see box at right)

Society for Participatory Medicine
(“the e-Patient society”)

  • Join as a corporate and individual member
    • Volunteer to lead an initiative (email)
  • The Society’s website
  • The Society’s blog, e-patients.net where I write from time to time (as others do). Free subscription.
  • Journal of Participatory Medicine (peer reviewed journal with narratives and evidence on the status of the movement). Free subscription.

Resources for e-Patients [Read more…]

Filed Under: Events 1 Comment

September 22, 2012 By e-Patient Dave Leave a Comment

My slides from the Amazing Speeches panel

I’m live-blogging this from the Amazing Speeches session at the Partnership With Patients conference in Kansas City. As promised, here are the slides I just presented.

Here are the three of us who presented – a picture I just grabbed from Twitter, of course. :-)

From left: @TiffanyAndLupus, me, @KaitBRoe.

(Yes, I’m listing them by their Twitter names – an essential part of creating a speaking career is to have a strong consistent identity in social media!)

Filed Under: Business of Patient Engagement, Events Leave a Comment

September 21, 2012 By e-Patient Dave Leave a Comment

Participatory Medicine and e-Patient hit the media in Maine: Morning TV and newspaper

I was in Maine Wednesday night, speaking to the annual meeting of the excellent (and very E) Maine Quality Counts, which is one of the sixteen Aligning Forces for Quality (@AligningForces) communities, a project of the Robert Wood Johnson Foundation’s Pioneer Portfolio. Aside from the dinner speech, I also met with their awesome very-E consumer advisory board – I swear, I’ve never seen a more savvy, wised-up, activated bunch of patients. It was terrific.

As part of the trip they arranged some media coverage for the cause. First, here’s an unrehearsed four minute chat this morning on Good Day Maine: (ten second commercial at the start)

I love that we’re getting to the point where it’s possible to discuss “e-patient” and participatory medicine in a way that comes across gracefully!

Then I visited the Bangor Daily News, for a lengthy interview and some snapshots. Health reporter Jackie Farwell had really done her homework – we spent no time on “so tell me your story”; instead we dove right into what this all means. The article’s here, Then, photographer Troy Bennett shot another quickie video, in addition to the usual photo. Well done, both of you!

Takin’ it to the streets!

Filed Under: Events Leave a Comment

September 14, 2012 By e-Patient Dave 20 Comments

Crowdsource my keynote! “Gimme My Damn Data, three years on”

Three years ago this month, at the Medicine 2.0 Congress in Toronto (photo at right), I gave my first keynote: “Gimme My Damn Data.” As I detailed recently, it was the beginning of a movement. And now, this weekend at the same event (at Harvard Medical School), I’ve been invited to give the closing keynote:

“Gimme My Damn Data, Three Years On: What’s Changed, What Hasn’t, and What Still Needs To.”

I have my own thoughts, but I’m sure you do too. What do you think? One big thing that’s changed is that this is a movement with many voices – I’d love to include yours. Leave a suggestion in a comment here, and if I use it, I’ll credit you!

For starters on What’s Changed:

  • ARRA / HITECH: The US stimulus bill, with its billions for adoption of health IT, has rolled out and is causing change.
  • Meaningful Use: in the US, we now have regulations that are tugging
  • The OpenNotes project has completed; its results will be announced next month. (A massive study to document what does and doesn’t happen if patients get access to their doctors’ actual visit notes.)

Starter on What Hasn’t and What Still Needs To:

  • It’s not a reality yet. Many providers still resist.
  • You and I don’t legally own our data. If we did, they couldn’t keep it from us.
  • Most of us don’t have good patient portals
  • It’s practically impossible  to pull together data from all sources into a single record.

What else??  I know there are tons more – help me!

Background information

[Read more…]

Filed Under: Events 20 Comments

September 7, 2012 By e-Patient Dave 10 Comments

“Visible” is not “transparent.” Let us see prices.

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:

Margaritas menu Sept 2012

“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.”

Filed Under: Uncategorized 10 Comments

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