Search Results for: communities

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

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December 14, 2012 By e-Patient Dave 15 Comments

Best Care at Lower Cost: As the crunch hits, will the best survive?

Update 12/16: comments below this post have added more detail and documentation.

On one level this is a happy post. On another level, it’s a storm warning.

The happy part:

Of all the amazing, inspiring, humbling things that have happened in this three year adventure, one of the best is being invited to participate in discussions with professional societies I respect. For instance, twice this year I’ve written for the SGIM Forum, published by the Society of General Internal Medicine. Real medical leaders are actively listening for the patient’s perspective on many aspects of the challenges facing health and care, especially in America.

For the current issue (December 2012 – click image at left) I was invited to write a post-election perspective for their Health Policy Corner on the outlook as reform rolls out. The angle I chose was to ask, as the new rules unfold and the business of medicine changes, will the best providers be protected?

It was a riff on the Institute of Medicine’s new report, Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. The most-quoted item in that report is that we have $750 billion of excess spending in American healthcare.

And that’s a problem. A big one.

The storm warning:

$750 billion is an incomprehensible number; it’s impossible to imagine how much financial pain there will be as we work to fix it. So 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.

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November 7, 2012 By e-Patient Dave 2 Comments

“My Health Counts: e-Patients” (coming soon from WNED, PBS Buffalo)

Check this trailer for a new program, to be launched in January, produced by WNED, the PBS affiliate in Buffalo:

One of the challenges of starting a movement like this, especially a Society with little budget, is that you have to bootstrap, like any modern business: you take what you have, make something of it, make something of that, and build from there – always always listening for what others find valuable.

SPM member Regina Holliday’s magnificent “cinderblocks” conference Partnership with Patients was one superb example. Another is that as many of us have gone about our business, we’ve spread the word as we are able.

A lot of people we talk to are “getting it” – and sometimes that turns out to be someone with reach. And boy do I have news.

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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…]

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!

September 5, 2012 By e-Patient Dave 3 Comments

New collaboration: Perry Cohen on ethics in research and patient-centered outcomes

This is the second in a new series on patient participation in guiding medical research.

Perry Cohen, 2012 — 2012, on the Michael J. Fox Foundation blog

Perry Cohen some years ago — Perry in Africa, 2008

Perry Cohen is a new friend and, I’m thrilled to announce, a new collaborator.

I learned about Perry during my MIT college reunion this June – my classmate Becky Donnellan heard about my work and said “You should meet Perry,” whom she’d met somewhere along the line. On my next trip to DC I met up with him, and indeed we hit it off.

But I’m not thrilled with the reason we need to collaborate: Perry has Parkinson’s Disease, and, as he puts it, “I’m losing my voice.”

That’s no small issue, because for sixteen years Perry has been a powerful and effective voice for the Parkinson’s patient perspective at the National Institutes of Health and the Institute of Medicine. In the progression of his disease, at present we can speak on the phone just fine, but the adrenaline of giving a speech – which he’s good at – is too much. In February he froze up, on stage, for two minutes, and had to be helped off.

So he’s asked me to help with his public speaking.

In this post I’ll introduce Perry, describe how we’ll be collaborating, and close with a specific example that shows how strongly he and I are aligned: an article he co-authored five years ago that blew my mind last week. (I mentioned it in Saturday’s post that began this series.)

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