e-Patient Dave

Power to the Patient!

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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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Two new radio appearances!

Introducing Alicia Staley @Stales as a sometime writer here!

Dave will make two appearances on the radio today and tomorrow, with podcast recordings online afterward. Listen in as Dave talks about some important topics facing patients these days.

KJZZ: “The Show”

KJZZ is an NPR station serving the Greater Phoenix, AZ area. Airing today at 5 PM ET, listen to “The Show” with Mark Brodie and Steve Goldstein as they discuss ideas around carrying your health data.  Dave was interviewed by Nick Blumberg about carrying your health information on a USB stick.  Listen in and let us know what you think!

Patient Safety Radio: (@SpeakUpRadiOh)

Dave will be a guest on tomorrow’s Patient Safety Radio with Pat Rullo. Pat hosts the “Speak up and Stay Alive” Patient Safety Radio series.  Dave will join Pat and talk about Shared Medical Appointments.  Listen to a sneak preview of the show, or join in tomorrow to listen to the whole show.

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A turning point for patient voices

Patients Included badge

In February I announced that after three years of struggle I’d reached breakeven. This has made new things possible – for instance, an office outside the home. It also makes possible a new policy for pricing my speeches.

This is a significant moment, so I’m breaking this into two posts: today the background, tomorrow the new policy.

Prologue

It’s been an uphill climb. Like many before me I’ve had many requests to donate my time: “We’d love to have you speak, but we don’t have any money” (or hardly any).

I’ve had to insist on being businesslike so I wouldn’t go out of business. This led to some interesting discussions, e.g. my most-commented post ever, on this site: “Should consumers be regulated?”

I want to do everything I can to foster the growth of this movement, both by changing the business climate and by helping others step in. So there have been issues to think about and manage, both on the business dimension and in the progress of the “movement,” if I can call it that.

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“Healthcare Matters” radio – listen live and call in, 11 am Sunday

WTIC Radio logo
Click to listen live

I just learned that the Hartford radio program where I’ll appear Sunday morning is available as “listen live” online. Here’s a quick note from yesterday’s announcement email:

On the next Health Care Matters: Letting patients help!

Join HealthCare Matters hosts Elliot Joseph and Rebecca Stewart, along with special guest “e-Patient Dave.” Dave deBronkart is a blogger, international speaker and stage four cancer survivor who doubles as an expert in patient engagement.

How do we engage patients more in their care? And how do we make sure it’s helpful? Together, we will tackle the toughest topics – and your questions.

Join the conversation this Sunday at 11 am Eastern, on WTIC NewsTalk 1080. Or listen online.

OpenNotes logo Among other things we’ll be discussing the OpenNotes project, the year-long study in which patients got access to their doctors’ actual “visit notes” – the things they write in your medical record. As I’ve often blogged, counter to some fears, just about everyone involved loved it and didn’t want to quit. That’s important, because as we patients become increasingly responsible for carrying the ball in medicine, we gotta have the information.

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Vigilance is valid: New rule for the culture of safety

Photo of David NashDavid Nash is Dean of the School of Population Health at Jefferson University (@JeffersonJSPH) in Philadelphia. Last week at the Maine Hospital Association’s (MHA) Summer Forum he and I both spoke. His talk was titled “Demand Better: Revive Our Broken Healthcare System.”

I hear a lot of speeches, and this one hit me between the eyes in a number of ways, combining some facts I’d heard before in new ways, mixed in with personal experiences. I hope to blog about several of these points (with his blessing); this is the first.

The story

The appendix of Let Patients Help is titled “Stop the Denial.” It’s about the reality that medicine is inherently hazardous, and medical staff pretty much work without a net. As I like to say, “In my own work I live through the Undo key, but clinicians don’t have one.” And they don’t work in a system that prevents human error.

Result? As the book says,

Did you know that in the best hospitals in America, 1 in 20 surgical patients dies of a complication? After the surgery? [HospitalSafetyScores.org] (In the worst hospitals it’s 1 in 6.) Hard to believe, yes?

If you were considering surgery, wouldn’t that change your thinking? Wouldn’t it make “Let’s wait a bit” seem like a prudent thought?

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Newest speech video: SAS Institute health analytics – business / tech / data conference

SAS speech video page screen capture

My videos page has recordings of various speeches. Here’s the latest – and, some are saying, my best. It was a month ago in Cary, North Carolina, at a big event conducted by SAS called “Health Analytics: From Big Insights to Big Breakthroughs.” It’s 56 minutes long.

Here’s the direct link to the video. If you’re not already registered on that site, you may need to register here.

Not all the slides are shown in the video; here’s a copy of them on Slideshare. Slideshare’s display software is pretty weak compared to what I do with PowerPoint :-) so some of the layouts display wrong on their site, but you can get the idea.

Don’t miss Peter Diamandis’s talk that day

Near the beginning I mention it. Here’s the link.