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October 11, 2011 By e-Patient Dave 4 Comments

“A new scientific truth…”

Max Planck, 1918 Nobel laureate (Wikipedia)

Sometimes patients complain when they discover a doctor’s views are out of date, even in the face of evidence. Well, that’s not new: here’s a quote from the guy who won the Nobel Prize in physics, in 1918:

“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”
~ Max Planck (Wikipedia)

This quote was cited by Thomas Kuhn in his incredibly important book The Structure of Scientific Revolutions, which recounts the tremendous social barriers to adopting new thoughts. Even the concept of bacteria subjected physicians to ridicule: “Pus is caused by invisible evil creatures? That’s witchcraft!” And in cancer, the importance of angiogenesis (cancer’s ability to grow new blood vessels as its fuel supply) was ridiculed for decades. Same for the bacteria that causes ulcers, and on and on.

Those of us engaged in changing culture – the culture of medicine – often experience this. The establishment “knows it’s right” and disses people whose experience runs counter to it; Kuhn says science is, amazingly, a fashion industry, where if you don’t wear the right glasses or shoes, you’re scorned. (The irony, of course, is that the scientific community is supposed to be evidence-based, and Kuhn established forty years ago that it’s not.)

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September 29, 2011 By e-Patient Dave 4 Comments

Interview and Boot Camp with Lucien Engelen at REshape Academy

Updated October 10: Added transcript of the video, at bottom.

On Tuesday morning, my Dutch colleague Lucien Engelen (Twitter @LucienEngelen) took me to the production studio in the attic of his little office and we shot this interview. I had no idea what questions he’d ask, and this was my day for jetlag confusion after a Saturday night redeye from the US. He edited it down, and boom, instant TV show! I’ll explain the context in a moment, but first, the interview (13:37):

Here’s a companion article (in Dutch) in Thursday’s “Skipr” (Dutch health newspaper) about REshape, including this video and an audio interview (also in Dutch) with Lucien.

The setting: Radboud REshape Center

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July 21, 2011 By e-Patient Dave 7 Comments

Putting the I (or eye!) in Health IT: ONC’s regional meetings

Updating again on August 11 at the Los Angeles meeting.

Updated 7/22 – added several resources and these bullets on connecting. What was I thinking, not mentioning this?? Get social:

Follow me on Twitter @ePatientDave
If you want to friend me on Facebook, puh-leeze tell me where you came from – it’s ordinary social media etiquette.

_________

This week I attended the second in a series of four regional meetings being conducted by ONC*, reaching out to the Federally funded organizations that are making health IT a reality throughout the country. I was the Wednesday lunchtime keynote speaker. (What a time slot – there’s nothing like a “How I almost died” story at meal time! But the message came across, deeply. Great people, very dedicated!)

Here are links to resources I mentioned in my speech, and a few more:

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> Boot Camp! <

Patient engagement is reshaping healthcare. Learn how. Learn why. Learn what to do.

First American edition: January 27, New York. Agenda and logistics below. Registration is now open on EventBrite.

e-Patients are equipped, enabled, empowered, and engaged in their care. They form empowered care partnerships with enlightened clinicians, sharing the load as well as the steering wheel. And they connect with each other, sharing knowledge and experiences in ways that were never before possible.

This is changing healthcare – reshaping what’s possible.

Learn how, learn why, and learn what to do, in this in-depth training from e-Patient Dave, the best-known spokesman of patient engagement. Save the date – registration should open the week of December 19.

Preliminary Agenda:

N.B.: Actual details are in development. An expert panel is expected, and hands-on web exercises; the following is a draft.

The e-Patient Boot Camp is the first-ever compilation of my keynotes and panel presentations from the past two years, speaking to dozens of audiences in many sectors: hospitals, care plans, small group practices, governments, government contractors, Federal policy meetings, health IT – everything from the Quantified Self to the Israel Internet Society, from healthcare improvement to the Duke Institute on Care at the End of Life. Get thousands of dollars of conference content in a single day, plus hands-on:

Session 1: History of Patient Engagement, and a Case Study
- Medical and cultural precursors; pioneers of e-patient behavior
- Case study: my near-fatal cancer, and how the internet supplemented the excellent medical and surgical care I received
- Pay it forward: my first blog
Session 2: “e-Patients: Empowered, Engaged, Equipped, Enabled”
- Discovering the e-patient movement and “the e-Patient White Paper”
- How can it be that patients – without medical degrees – can genuinely bring value to the table??
- Health on the internet: harnessing the value, preventing the risks
- Doctors online – shifting the balance of online quality
Session 3: “Give Us Our Data” – reshaping care through health IT
- The validity and usefulness of patient access to medical records
- Patient engagement becomes Federal policy: the US government’s Meaningful Use rules
- Data quality in our medical records: my experience
- “Google Earth for my body”
- Innovation in the era of Open Data; the Startup Health initiative
Session 4: The future of “e”: other e-patients and reshaping the care dynamic
- We are many: other e-patients and their stories
- e-Patients and clinical trials
- Shared Decision Making: Engaged patients at the decision table
- A glimpse of the future: What Watson may mean for e-patients and their clinicians
Plus: hands-on exercises. Bring your own browser – possible examples:
- Researching disease information – filtering the gold from the garbage
- Patient communities
- Group discussions

Curriculum can be customized for future events; see below.

Who should attend

People who want to understand how e-patients are reshaping what’s possible in healthcare. Health workers, government policy people, innovators, investors, anyone.

And patients, and their “e-patient proxies”: friends, relatives, community health workers.

Your instructor

“e-Patient Dave” is a dynamic, highly rated international keynote speaker, author, and advisor on government policy. The Boston Globe called him “a recognized online champion of participatory medicine,” Health Leaders featured him in its “Patient of the Future” cover story and named him (and his physician, Dr. Danny Sands) to their “Twenty People Making Healthcare Better.” See his bio, his Wikipedia page, testimonials, honors, videos of past speeches, and his TEDx talk (with standing ovation!) in the Netherlands this April.

Your schwag

Registrants who pay in advance will also receive:

A Boot Camp t-shirt
Dave’s first book, Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it.) Get it signed on-site!

Registration and Logistics

Where: Edelman, 250 Hudson St, New York, N.Y. (Lower Manhattan)

When: 10:00 a.m. to 4:00 p.m., Friday, January 27, 2012.

Price:

$499.

Patients just $10, space allowing. Must apply for this status, on the ticket purchase page.

50% off for health professionals who bring one of their patients and promise to practice what we’ll preach.

Registration is now open on EventBrite.

No recordings, please.

Future Boot Camps

We seek partnerships with regional healthcare thought leaders, around to c0-brand, co-promote, and produce this event, adjacent to major conferences or as an independent event, public or private. See the contact page.

Optional modules for custom boot camps:

The e-Patient Boot Camp is in its early days, crafted out of two years of speaking engagements. Additional content is in development for delivery in private or public sessions. Examples:

Deep dive on Meaningful Use – regulations and reality from the patient perspective
Challenges of diagnosis and how e-patients can help
Projects already underway with open health data: the VA’s Blue Button; the Direct Project
Healthcare: the only industry where quality’s not defined by the customer.
- Implications for transformation efforts and quality improvement.
Deep dive on shared medical decision making and practice variation: realities, problems, impact on costs and happiness
Safety and medical errors: what you need to know and what to do about it
Researching: Evaluating what you read, in the mass media, online, and in medical journals
Patient communities: finding them, starting them
Social media and healthcare: finding what you need, sharing what you have

Additional modules about inspiration, life, and dealing with disease, not specific to patient engagement:

The power of attitude in the face of obstacles
Facing death: my experience as a patient confronting the end of life.
- Note: Your time will come; your parents’ time will come.
- Patient & family engagement in end of life decisions
Attitude in the face of illness: evidence, and being powerful in the absence of evidence
Disease happens while life is happening: getting by, making do, making the most of it – how to “laugh, sing, and eat like a pig” no matter what life hands you.

As I’ve said before, having faced the end, and survived, I’m using my “free replay” to change the world. Let me know how we can work together.

May 25, 2011 By e-Patient Dave Leave a Comment

Stifling Primary Care: Why does Medicare/Medicaid Still Support the “RUC” Rate Setting Cabal?

This isn’t directly involved with my causes of patient engagement and participatory medicine, unless you believe that a patient engaged in their health wants to know the best way to be healthy (duh) and thus avoid the need for health care. It keeps costs lower and keeps the family out of the hospital – good deal, huh?

The best way to do that, of course, is with prevention and good primary care. So you’d think preventive services would be the most highly valued.

Well, they’re not, and a major reason is that there’s been a secretive rate-setting cabal for twenty years, which decides who’ll be paid how much. And those people vote, year after year, to pay primary physicians less, and pay specialists more. To quote a Wall Street Journal article last fall:

Three times a year, 29 doctors gather around a table in a hotel meeting room. Their job is an unusual one: divvying up billions of Medicare dollars.

The group, convened by the American Medical Association, has no official government standing. Members are mostly selected by medical-specialty trade groups. Anyone who attends its meetings must sign a confidentiality agreement. …

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May 10, 2011 By e-Patient Dave 15 Comments

Grand Rounds, May 10, 2011: TEDx Maastricht – Patients Rising

Welcome to Grand Rounds for May 10, 2011!

I have a confession: I’m new at this. My initial exposure to Grand Rounds a while back gave me a warped view, and as I worked on this project, I was a little bit graceless. (Those of you who wrote to me about it know what I mean. I meant well…)

This week’s theme is the TEDx Maastricht conference that happened April 4. But first –

These news highlights were submitted:

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