e-Patient Dave

Power to the Patient!

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Going global: Let Patients Help Europe Tour, Fall 2013

Euro tour map Nov 2013
Map created by www.travellerspoint.com. Fun and free!

Let Patients Help is a successful book, but in the early days of its movement, it was common to hear skeptics say “This is only in America.” Boy was that wrong.

The first massive proof was TEDx Maastricht, the seminal event constructed by Lucien Engelen from Radboud UMC (university medical center) in the Dutch town of Nijmegen. It was such a big deal – the first conference I know of anywhere that was totally focused around patients … so many patients that a blogger Grand Rounds was devoted to videos of the talks patients gave at that event.

It was the first time anyone heard the chant “Let Patients Help” in a TED Talk, and the response has been enormous: almost a half million views so far on TED.com. TED says there’s usually the same number on other sites, so that means almost a million views. Volunteers have added subtitles created in 26 languages, so I’d say it’s not “only in America.”

This fall, Europe goes “e,” big-time, with four events in one month.

In November four events in four European customers will focus on Let Patients Help, all driven by visionaries who are seriously working on patient engagement – in Athens, Budapest, Amsterdam and Brussels.
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Speaker Academy #11: Introducing ourselves (workshop begins!)

At six weeks, my granddaughter’s already practicing her confident introductory handshake :-) (Photo: Jon L’Ecuyer. All rights reserved.)

As this series has progressed and I’ve chatted with some of you, I’ve thought we really ought to get to know each other. So, this post is a “lecture,” and the exercise will be to discuss in the comments. To participate:

  • If you have an “about” page on your site, or any other description online, link to it in a comment below.
  • If you don’t have one yet, you will. :-) So git to work: draft something in a comment, and we’ll all offer suggestions.

Don’t hold back thinking your current status isn’t good enough – that’s why you’re in school! Empowered people act, knowing they may need to learn and adjust.

Some tips on your intro as a conference speaker:

  • The tone can be professional-sounding, academic-sounding, casual, playful, edgy, confrontational – it’s your first impression on people. Be yourself, as you want them to think of you.
  • Start with the single most important thing you want them to know. At first you only have one moment of their attention.
    • It’s no tragedy if they read it and say “Nope”!  You’re not trying to make everyone like you – you’re trying to find a good fit.
  • Then you can flesh it out with more info, if there’s reason to.

Here’s an important tip my dad (VP of Sales at a division of 3M) taught me about resumes:
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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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Pricing policy

Updated Dec. 30, 2015. See the changes under the blue headings.

Prolog and principles

In 2013, in A turning point for patient voices and Prices must have integrity, I laid out my thinking: a professional price policy must make sense, and the rules must be real – fair to all clients and consistently enforced.  Re “making sense,” I’m an evangelist – an activist with a cause – so my price policy offers ways for clients to earn discounts by furthering the cause.

Update as 2016 starts: As the seventh year of this work starts, three things are newly clear, different from any past year:

  • The time has come to reach out to the public, including community health workers.
  • Nursing is turning out to be a great role in healthcare for making patient engagement a clinical reality. Nurses spend much more time face-to-face with patients and families.
  • The time has also come to get our claws into the world of medical education curriculum, so we start growing the next generation of doctors and nurses with patient empowerment “baked in” to their thinking.

As you’ll see, those three factors are reflected below. Here is the policy, fully aligned with my values as an activist for the “Let Patients Help Heal Healthcare” social movement.

1. Full price.

Event organizers, call or write for my current speech pricing. As my testimonials page shows, I deliver.

2. Add a Promoted Public Event: 25% discount (new for 2016)

It’s time to start engaging the public (ordinary citizens) in patient engagement – teaching people the rationale for (and the how-to’s of) being engaged, activated partners in their health and their care.  So, if I’m doing a speech for you, I’ll do a second speech open to the public (and tuned to them), if you will handle the logistics and get it promoted in the local media … and I’ll knock 25% off the price of your speech. (Note: a particularly great target for these events is community health workers.)

Yes, I’ll do two speeches for less than the price of one. In essence I’m buying your help in spreading the word to the general public.
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Speaker Academy #3: Q&A on selling (Trevor Torres)

Trevor Torres
“Diabetes Evangelist” Trevor Torres

Lessons one and two were about understanding the world into which you want to speak, using text written by Randi Oster. We’ll continue with her tips #3-5 tomorrow but today I’ll step off that theme to answer some questions posed in a comment on Lesson 1 by Trevor Torres, a 17 year old hotshot “Diabetes Evangelist” who’s just started doing speeches. (See his first speech video* on his site.)

Here’s Trevor’s comment, with my answers embedded:
_________

The main thing I’m interested in right now is getting more speaking gigs! To that end, some questions:

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e-Patient request: Recurring bleeding & misery after partial knee replacement

From time to time I post an e-patient request from someone who seeks information or a community of patients with a particular condition.  This one is for a patient who had knee surgery in April, and it hasn’t gone well; current status is “Lots of pain, mood low, can’t walk well at all.” The history:

Patient is 56 years old, athletic male in good health.

Partial knee replacement performed April 12, 2013. Within four weeks he was back in surgery because of bleeding.

They retrofited the appliance June 7, sewed him up and sent him home within a week.

Started bleeding again in 3 weeks; arteriography now scheduled for July 12 w/ radiologist to find bleeding, (possibly). Two options anticipate: rest, wait, heal; and/or, full knee replacement.

Any advice, thoughts, experience?

If you have advice, please reply in comments below.

If for some reason you want to reply privately, see my contact page. And thank you, all.