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January 6, 2015 By e-Patient Dave 4 Comments

Speaker Academy #21: Interview at Mayo with @Chimoose on the value of patient voices

Snapshot of Greg and Dave talkingThis is the latest in the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to speak on a subject but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.

Academy cadets, I hope this entry will be useful in one of our key tasks: conveying to potential clients that there’s genuine business value in hearing a capable speaker present the patient’s perspective.

[Read more…]

Filed Under: Speaker Academy 4 Comments

December 27, 2014 By e-Patient Dave 1 Comment

Involving patients in the DESIGN of clinical trials

Link to my speech video
Click to view the video

This post is a mixture of glee and facts. I hope you’ll find plenty of both. Because, you see, lately I’ve been speaking and blogging a lot about the changing role of patients in clinical trials … and in the spring of 1972, I myself was a subject.

In the US government’s pot smoking experiments.

As you’ll see, the timing was amazing – they told me I was subject #1.  And, as you’ll see, there’s evidence they meant it.:-) To watch, click here or click the image at right.

I’ve been waiting years for the right moment to share this story, because it’s a hoot – and this year the time finally came:

  • It had to be the right setting, and Daniel Kraft’s Exponential Medicine conference is just right – it’s wiggy and futuristic but real science and realistic.
  • The story also needed to be told in a valid context, and everything lined up:
    • In September fall I spoke in Madrid (blog post) about the role of patients in research
    • At the same time, the Wall Street Journal had a great article about patients being listened to differently by researchers (my post)

So I pitched the idea to “xMed” director Daniel Kraft MD (who’s also a fighter pilot, btw), and he agreed. I guess it worked out, because today on Facebook (see illustration) he posted the video and said:

Brilliant lessons … 1970s experience as a marijuana clinical trial subject at MIT … has implications for the design of today’s clinical trials … one of [the] highest rated (and funny) talks

That sounds like a happy conference organizer.

Enjoy, and please share widely! Who said science can’t be fun??


Additional resources

Errata

For a number of reasons I only got 90 minutes of sleep the night before, and I made (at least) these mistakes:

  • Early in this speech I show some slides from my TED Talk in 2011. The slides have a typo – they say 2009.
  • Around 6 minutes I say that Dr Bettina Ryll shared my session at the Madrid conference. Dr Ryll did create the slide I showed, but my session was shared with Mrs Anastassia Negrouk, who’s also in this speech.
  • On the very last slide the William Gibson is correct but I misspoke – I said “not easily distributed” when it should be “evenly.”

Related links cited in this speech

  • The TED Talk
  • The IOM’s 2012 report Best Care at Lower Cost, with the important declaration that the learning healthcare system should be “anchored on patient needs and perspectives”
  • The Wall Street Journal article that I cited, on researchers actively engaging patients on how they see the issues
  • The FDA announcement that I mentioned at the end, announcing patient participation in medical product discussions

 

 

Filed Under: Events, Government 1 Comment

December 22, 2014 By e-Patient Dave

Holiday break!

After 198 days on the road this year, 64 trips, 180,771 miles and ten countries, I’m taking a break. Off duty until January, then spending the first week of 2015 at meetings in London.

I’ll probably still blog when things come to mind. For those, scroll down. Meanwhile, for time-sensitive communications, see my Contact page.

May the holiday season bring you and yours all the best – and thank you to all my clients who’ve supported this important movement for better healthcare around the world!
[Read more…]

Filed Under: Uncategorized

December 22, 2014 By e-Patient Dave 1 Comment

Joe Cocker’s dead at 70. (Did you see his Woodstock parody?)

Photo: Getty Images, on the BBC story. Click to visit it.

Joe Cocker has died of cancer. The BBC story, twenty minutes ago, is here. Holy crap, he’s (was) less than six years older than me. (I’m going on Medicare in six weeks!)

The man was a maniac singer. My biggest laugh of the past decade was when someone put subtitles on his epic Woodstock rendition of “I get by with a little help from my friends.” See the YouTube below. (Email subscribers, if you can’t see it, coming online to see it here.)

Joe, this one’s for you, man. Hope you’re having a wild time, wherever you are now.

 

Filed Under: Uncategorized 1 Comment

December 18, 2014 By kristin.gallant Leave a Comment

The movement comes to Latin America! Listen on W Radio Colombia live, 1 ET

Click to access the livestream player

A very quick note for a last-minute event: I’ll be interviewed live today on W Radio Colombia. (Producer Marianggela Cortés Forero tells me it’s “a news station with audience in Latin America, EEUU and Europe. Number one in Colombia.” (Twitter: @WRadioColombia)

Here’s the Listen Live link. If you miss it, a recording will be posted after; I’ll add the link here.

Related information:

  • Here’s information on the Spanish edition of Let Patients Help! A Patient Engagement Handbook, on Kindle and in print.

Filed Under: Events Leave a Comment

December 16, 2014 By e-Patient Dave Leave a Comment

“Balancing Diabetes” by @SixUntilMe

Balancing Diabetes cover

Kerri website photo
Kerri’s photo on her blog

I’m going to do something really rare: I’m going to endorse a book I’ve barely started reading. It’s Balancing Diabetes: Conversations about finding happiness and living well, by the famous diabetes blogger Kerri Sparling, aka @SixUntilMe. (She was six until she was diagnosed and became the “me” she is today.)

This endorsement is rare because I’ve always said I can’t endorse something I haven’t consumed. (Did you know that most book blurbs are written by people who haven’t read the book?) But this situation is out of the ordinary:

  • Last week at the SuperPatients event in Providence, I witnessed what a powerful speaker Kerri is. She owned that room for her 20 minutes – like a good TED Talk. And she wasn’t just a capable speaker – she created the world of living with diabetes. As much as I’d heard about diabetes through the years, I had never gotten the world of living with it. To create that in minutes takes extraordinary skill.
  • She signed my copy of her book, and last weekend I started reading it. Bingo, in the first pages it was clear that this is the same voice. (I should have known, because her blog is just as direct and powerful, but so often books come out different. This one works.)

So I’m endorsing. Buy it if you want to understand life with diabetes, or if you want a great read about how different a patient’s point of view is, compared to what we read about the disease per se.

I also love that Kerri has woven this disease into her life, and though she doesn’t love the disease, she loves her life. That’s important, because the book is about balancing, about having a life you love.

See, that’s patient centered care: looking at care from the patient’s perspective, separate from what the lab tests say.

p.s. I first learned of Kerri years ago when she blogged about her pregnancy. Why’s that remarkable? Because when she was diagnosed as a child she was told she shouldn’t have children. Well, as fans of her Facebook page know, today she has one of the most remarkable, amazing four year olds in the world. The child’s nickname is Birdie… check the cover.

 

Filed Under: books, public speaking Leave a Comment

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