e-Patient Dave

Power to the Patient!

  • Home
  • Blog
  • Speaker
    • Corporate & associations
    • Healthcare
    • Videos
    • Testimonials
  • Author
  • Advisor
  • Schedule
  • Media
    • Recent coverage
    • News coverage 2010-2014
    • Book mentions
    • Press resources
  • About
    • About Dave
    • Boards & Awards
  • Resources
    • Patient Communities
    • For Patients
    • For Providers
    • Speaker Academy
  • Contact

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

[Read more…]

Filed Under: Government, Health policy, patient engagement 9 Comments

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!
[Read more…]

Filed Under: Events, patient engagement 8 Comments

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.”
__________________

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.

Filed Under: books, Health policy, Participatory Medicine, patient engagement 10 Comments

October 23, 2012 By e-Patient Dave 4 Comments

My daughter gets her E on.

Running cross country, 1999This is giddy; deal with it. :-)

Regular readers know all about my awesome daughter, Lindsey deBronkart L’Ecuyer. The one I cheered on, in high school cross country.→ →

The one I walked down the aisle in 2009, when she married Jon.

Finishing the Boston Marathon, 2012
←The one who ran her first Boston Marathon last spring, in near-record heat, and finished in the middle of the pack.

Jon-Lindsey-Dave in Nice

The one Ginny and I met up with (with Jon) when our vacations crossed paths last summer, in frickin’ Nice. France.→
(Their vacation was much more orchestrated than ours. In some ways she’s not at all like me.)

The one who’s now assistant cross country coach at Marblehead High School, where she’s a science teacher.→

My baby girl, all grown up and adult and functioning in the world. Swoon.

Well, she called me today, all proud and happy and said something good happened today. Something very E.

She’d decided to get a DNA test (she’s always been fascinated with DNA) to see if she could learn more about a particular condition that runs in the family. Having heard a few things (ahem) about the unpredictability of medical bills, she checked carefully to be sure that everything the hospital would charge would be covered by insurance. Yes.

Well, the bill arrived, and oops, the hospital work was covered, but the lab that did the work is out of network!  A $320 bill! Grrr.

So, what does an empowered person do? Rather than blowing up, she first explained her situation to the insurance company.

[Read more…]

Filed Under: Participatory Medicine, patient engagement 4 Comments

October 18, 2012 By e-Patient Dave 9 Comments

See you in the Library. Yes, *that* Library.

Screen Shot of the announcement (click to go there)How do you know when an idea is taking root? It’s a question I constantly ask, in both my inside and outside voices, as I travel around banging the drum for listening to patients as a worthy voice in healthcare. Well, this month I got a piece of news that blew my mind so much that it’s taken me two weeks to decide what to say:

This blog is now being archived by the National Library of Medicine.  In their History of Medicine Division.

Their post about it is here. Quote:

The National Library of Medicine has a mandate to collect, preserve and make accessible the scholarly biomedical literature as well as resources that illustrate a diversity of philosophical and cultural perspectives not found in the technical literature. New forms of publication on the web, such as blogs authored by doctors and patients, illuminate health care thought and practice in the 21st century. (Emphasis added.)

… NLM has collected the following examples:

And guess who’s listed first:

e-Patient Dave

…a cancer patient and blogger who has become a noted activist for healthcare transformation through participatory medicine and personal health data rights. Mr. deBronkart writes in this post as a newly diagnosed skin cancer patient who is taking action to make his treatment most cost-effective. …

[Read more…]

Filed Under: patient engagement 9 Comments

August 24, 2012 By e-Patient Dave Leave a Comment

“Mind the Gap” on patient engagement: Uck, “What???” and the scapegoat disconnect

Sometimes I don’t know where to post something – on e-patients.net or here. My dividing line is usually: if it’s specifically about participatory medicine, it goes there; if it’s about my views about healthcare in general as someone who goes to a lot of meetings, or specifically about patient engagement, it goes here. This one’s both; I posted it on the e-patient blog, but I want it on this archive too.
________________

Over on Mind The Gap, Steve Wilkins (Twitter) has a poster about patient engagement that annoyed me:-) right out of the box – because although I pretty much like everything he does, the poster starts with what I find to be the ouchiest mental disconnect in all of medicine today. But it quickly follows with the flipside. Here’s a screen grab from its top:

Gut reaction to first quote: What?? “The lack of patient engagement is the Achilles Heel of health care delivery”??  Shades of Health Leaders magazine last October, which said – in an issue on Engaging the Patient no less! –

In our annual Industry Survey, leaders cite patient noncompliance and lack of responsibility as the fifth-greatest driver of healthcare costs … a quarter of respondents pointed to patients as among the top three cost drivers, ahead of health plan overhead, medical devices, pharmaceuticals, and malpractice litigation.

I love it – patient satisfaction scores are generally mediocre, 1 in 70 Medicare admissions ends in accidental death (Inspector General, Nov 2010), and the people who run these chop shops blame costs on their slacker customers. Sounds like scapegoating to me!

[Read more…]

Filed Under: Participatory Medicine, patient engagement Leave a Comment

  • « Previous Page
  • 1
  • …
  • 11
  • 12
  • 13
  • 14
  • 15
  • …
  • 18
  • Next Page »

Click to learn about Antidote’s clinical trial search engine:

Subscribe by email

Thanks! Check your inbox or spam folder to confirm your subscription.

News coverage

Click to view article


     

    


     
     
 
   
     
     
    


Archives

Copyright © 2025 e-Patient Dave. All rights reserved.