e-Patient Dave

Power to the Patient!

Search Results for: let-patients-help

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Let Patients Help, Cost-Cutting Edition, Part 3: Shopping for my next CT scan

Since November  I’ve been blogging about what happens when a patient tries to help control costs, in my cost cutting edition posts. Most recently I noted that this stuff takes time, especially since our glorious American healthcare system seems to be set up to block our access to what things actually cost … or at very best, we have no channels and pathways to let us find the information.

Well, ladies and gents, I’m fed up.  I have to get on with life.  I’ve been trying to be a responsible, engaged patient, and if the established channels won’t make it easy for me to find out what I need to protect myself, I will blow the whistle, announce what I’ve found so far, and move on. And we’ll take it from there.

I’m leaving tomorrow for 11 days of work in more sane countries – Switzerland and Holland – so I’m going to report the status here.

A caution and apology at the outset: I expect this will be read by some of the people I’ve spoken to at these companies. A lot of the frustrations I express here are because we couldn’t connect. I am grateful for your effort; you’re just too hard to reach, which is a problem if you’re the only one at your company who can help with this kind of work. I will appreciate your continued effort as we work through this change in American healthcare.:)

Later I’ll blog about the results of my research into my basal cell carcinoma. But for today, let’s just look at the simple (you would think) matter of getting an important CT scan.

[Read more…]

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I’ve started an RFP for my skin cancer

RFP thumbnail (click to visit the document)

Be sure to scan the 57 comments readers added, below.

The other day I announced my new skin cancer diagnosis and discussed how I’ll blog my approach to it as an e-patient.

I’ve decided to explore my options by doing what companies do when they’re shopping for a solution: they write a Request for Proposals, and let vendors reply. But in this case what I published isn’t cast in stone – I invite discussion and suggestions. And, significantly, I start with the context: partnership; participatory medicine –

I’m approaching this through an RFP process because I believe in “participatory medicine,” in which patients play an active and responsible role in all aspects of healthcare. I believe patients should play an active role in making care more cost-effective and patient-centered, by being responsible about costs and by saying what they want.

 

Here’s the RFP, in Google Docs. At top right of that page there’s a place to leave comments, or discuss here. Thanks for helping!

Update: This triggered an enormous amount of discussion on social media, additional posts here (with the results of my shopping), and even an article four years later in the New York Times, which I posted about with additional thoughts and resources. [Read more…]

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Let Patients Help, Cost-Cutting Edition, part 2: Shingles vaccine

Corrections added Jan 10 as noted. See sections marked “Update 1/10”. See also my comment tonight on today’s disgusting experience of trying to sort this out, and our ultimate rescue.

Two months ago I posted Let Patients Help, Cost-Cutting Edition, part 1: a bill:

I often hear about how patients are a major part of the cost problem – their “non-compliance,” their wanting everything they can get, wanting it for free, etc.  So, let’s see what happens when a patient who wants to help cut costs gives it a try. …

In that case I tried to fathom a so-called “Explanation” of Benefits, which was in fact unfathomable. (The FTC forced cigarette makers to be truthful in labeling; can’t they force insurers to stop using “explanation” on something nobody understands?)

This time my wife and I are shopping for vaccines. Specifically, shingles. And trying to be a responsible consumer turned out not to be easy.

[Read more…]

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Special event: TED Conversation on “Let Patients Help”

I’m having so much fun with this TED video (see earlier post) that I hardly know what to say. The best thing is that the simple message “Let Patients Help!” is spreading around the world – it’s got over 180,000 views so far, and volunteers have added subtitles in nine languages – most recently Persian (Farsi) and Korean. People are passing it from friend to friend to friend – clearly, this has tapped into a universal desire: let patients help heal healthcare.

Yesterday the TED people even gave it a vanity URL: http://on.TED.com/Dave. How fun is that??

The next big thing is a live “TED conversation” Wednesday at 1:00 p.m. EDT (10 a.m. Pacific, 7:00 p.m. in Central Europe, etc). The topic ties into one of the key statements in the video: “Patients are the most under-utilized resource” in healthcare. The question:

Why is the patient
the most under-used resource in healthcare??
How did that happen??

To participate, some preparation is required; instructions below:

About the event

  • TED Conversations are online discussions about TED-worthy topics. Many are started by members of the TED community; you can start one yourself. Here’s the Conversations page.
  • Some Conversations are live one-hour discussions about a question that’s been proposed by a TED speaker. That’s what this one will be.
  • The question is posted a day in advance, at 3 pm ET. Comments will not be open until the event starts.
  • You’ll be in a group discussion room, typing with other people. People post questions, and I’ll see them and answer as much as I can. (A moderator will be watching for spammers and trolls.)

Preparation

  • Create a TED.com account. Do this now, before the event: http://www.ted.com/pages/114
  • Start thinking now about what you’ll want to say during the event.
  • Tell friends, if you want.

The event itself

__________

Where did this speech come from, anyway?? Who started this?

It happened at TEDx Maastricht, a distinctive, terrific event last April 4, in the south Netherlands city of Maastricht. (Here’s a Blogger Grand Rounds post with many videos from the event.) Perhaps most significant, the first speaker announced for that event wasn’t a big name celebrity, it was a patient. Just a patient. And that’s what the event was about: putting the patient at the center of the whole health conversation.

Next year’s event is already scheduled – April 2, 2012. I’ll be in the audience if at all possible, because there were some sharp talks, and event production was excellent.

TEDx Maastricht is produced by Lucien Engelen, “health 2.0 ambassador, speaker, author and Director of the Radboud REshape & Innovation Centre at UMC St Radboud in Nijmegen.” Reshape? Yes – as in, taking healthcare apart and putting it back together, better.

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Let Patients Help hits the big TED site!

I learned today (via Twitter!) that TED.com has posted my TEDx Maastricht talk, with its rallying cry “Let Patients Help,” on the TED.com home page. Wow.

For those who don’t know, TED.com is the “real” TED event’s website. TEDx conferences are smaller, independently organized events, with varying formats. So it’s quite a thrill to have a TEDx video promoted to the “big TED” site. [Read more…]

> Boot Camp! <

Lecturing at FutureMed, at Ray Kurzweil's Singularity University, NASA Ames Research Center, Mountain View

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.

Front cover

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.