e-Patient Dave

September 13, 2011 By e-Patient Dave 6 Comments

A surprise second book: Facing Death – With Hope

This short book has “mysteries of the universe” written all over it.

Earlier this month I escaped for a few days to write a book called Let Patients Help. For whatever reason, this one came out instead: an updated edition of the “Facing Death” chapter from my previous book, with a new prolog to make it a standalone booklet. It wasn’t what I’d planned to write, yet when I finished, I had a sense of peace and completion – like I had completed what I actually needed to do, whether I knew it or not.

Through Amazon’s automated self-publishing tools, it’s already complete, proofed, and ready to ship. The book’s web page, with links to order it in paper or on Kindle, is ePatientDave.com/FacingDeath.

The message is what I saw in my own crisis. The title says hope, but it doesn’t say hope will cure anything; it won’t. Yet there is hope – Jerome Groopman MD’s book Anatomy of Hope says “There is an authentic biology of hope.”

Whatever your path – wherever you are on this journey – I hope my experience will help. And whatever your outcome, this booklet’s about being awake to life while we have it.

September 8, 2011 By e-Patient Dave 1 Comment

“I beat cancer so I could dance with my daughter at her wedding”

I’m thrilled that our government has put up a great new website, www.HealthIT.gov, with tons of info about electronic medical records, both for providers (docs & nurses) and for patients & families. I’m even more thrilled that they had the good sense to drive home the impact with five real patient stories – some good, some bad – where medical records or the lack of them) made a difference.

And I’m REALLY thrilled that one of them is about my daughter and me. :–) Click the picture to go to the site.

So much of health IT discussion is about the geeky “CIO” (chief information officer) stuff, and loses track of what it’s all about: people’s lives. Congratulations and thanks to the good people at that part of our Department of Health & Human Services – Josh Seidman, Claudia Williams, Lygeia Ricciardi are the three I know best – for this TERRIFIC campaign: “Putting the ‘I’ in Health IT.” Yes.

August 31, 2011 By e-Patient Dave 6 Comments

ACCEPTED! – Vote for my proposal for South By Southwest! “Let patients help: Why healthcare must wake up”

Update 10/24/2011: I just learned this proposal was accepted. Wow.

Okay, so I’ve been online forever and I’m supposed to be savvy. Well, so sorry, for this big deal event I’m a clueless goon: South By Southwest. AKA, SXSW.

I won’t even try to explain it because I’ll get it wrong but it’s A Big Deal every March in Austin TX, with a huge culture of its own. People (like me) who aren’t in the in crowd are befuddled. If you don’t know about SXSW, read its history on Wikipedia. Or, just do as I command:

If you don’t already have a free account, create one.
Click here to view my proposal. (Details below.) Sign in if necessary.
Click the Thumbs Up button:

Here’s the thing: VOTING CLOSES FRIDAY. Yeah , I messed up – didn’t understand the process, and got too busy with life (and “vacation”). So it’s deadline time. NOW.

So VOTE NOW, and bring all your friends and family. If, that is, you agree that healthcare must wake up and let patients help.

Details of my proposal

Here’s the text of my proposal, with a few additions:

Description

As boomers age, healthcare’s in a nutcracker: a surging population of elders waits to be served by a rising shortage of doctors and nurses. It will be a healthcare famine – extremely unpleasant for all involved – if we don’t change things fast. We must empower and enable patients and families to do more themselves.

That’s the point of the e-patient movement – Empowered, Engaged, Equipped, Enabled – identified in the 1990s by Austin resident “Doc Tom” Ferguson MD. The internet is a massively useful resource for healthcare, if we use it well: it can connect us with others who share our needs, and connect us with information – invaluable medical information – sometimes information that our own doctors haven’t seen, because they too are overwhelmed by an information explosion. Who can keep up??

Patients can help. Yet we’re not only ignored by most of healthcare, we’re often discouraged from applying our minds and energy to helping the cause. This talk lays out the evidence that patients CAN contribute value, and healthcare MUST accept it – urgently.

Questions
Answered

How has the internet changed the balance of power in healthcare?
What are the overlooked drivers of healthcare’s dysfunction?
Are Google/Binging patients an insult to doctors? Why or why not?
How is it possible that people without medical training can add value to a medical crisis? (Seriously.)
What are the “Gimme My Damn Data” and Blue Button movements, and how can they enable revolution?

August 30, 2011 By e-Patient Dave Leave a Comment

Dartmouth Summer Institute for Informed Patient Choice: Who can fix health care? Let patients help!

I’m speaking this morning at the Summer Institute for Informed Patient Choice. It’s a big-deal event in the world of Shared Decision Making (SDM), a topic I’ve written often about on this blog and on e-patients.net.

Here are links to resources mentioned in my talk.

TEDx videos: “Who can fix health care? Let patients help.” It amazes me that the two of us knew nothing about each other’s talk, but these talks fit together as if they were choreographed:
- Al Mulley’s talk at TEDx Dartmouth, March 2011: Who Can Fix Health Care?
- My talk at TEDx Maastricht, a few weeks later: Let Patients Help
Engagement Behavior Framework from the Center for Advancing Health (CFAH). This model, announced in May, is valuable as our movement grows: “Okay, we agree that it’s good to have engaged patients. What specifically does that mean? How can we get to work?” CFAH’s framework answers it:
- [Read more…]

August 12, 2011 By e-Patient Dave 4 Comments

Views and languages for “Let Patients Help”

^{Updated 11/4/2011}

This is an ongoing tally of response to the Let Patients Help talk at TEDx Maastricht, April 4, 2011. It went up on TED.com on June 29, got 50,000 views in the first 24 hours, and has since been traveling around the world.

In my last day job I worked in analytics (measuring Web traffic), so of course I’m going to track this baby.

^{[Read more…]}

August 4, 2011 By e-Patient Dave 1 Comment

Links for the Consumer Stakeholder working session

Here are links to resources I mentioned in today’s session. First, I forgot to mention – the National eHealth Collaborative (NeHC) has started a great Consumer Consortium in Washington, bringing together over 150 consumer oriented groups. They’re accumulating a substantial inventory (list) of tools, links, resources – all kinds of things to encourage consumer engagement. Encourage groups to join!

Today’s slides are at bottom. Here are the items I mentioned in today’s talk:

VA’s “Blue Button for All Americans” challenge – $50,000 to the first PHR developer to install one in 25,000 providers. (Click for details.)
Example apps told to us by patient groups yesterday:
- i-Inject Injection Tracker (for MS and anything else)
- Parkinson’s Toolkit, from the National Parkinson’s Foundation
- Seizure Tracker – developed by a parent
Visible Body (a paid product with free demo) – I’ve proposed someday “mashing this up” with our own scan data or other data, to create “Google Earth for my body”
Google Body Browser – a very very primitive free alternative
Blog posts about the Robert Wood Johnson-funded OpenNotes project
- My first one, including the Seinfeld episode
TED talk by Wired editor Thomas Goetz about redesigning our medical data
“Consumer” or “Patient”? My post last December.

Here are the slides: [Read more…]