e-Patient Dave

Power to the Patient!

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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

 

 

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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!
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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.

 

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“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.

 

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From TEDMED: What veterinarians like my wife know about medicine.

Photo of Ginny and "Chester"
Ginny and “Chester”

My wife Ginny is a veterinarian. Being a vet like her is different from being a human doctor in several ways:

  • Vets emphasize prevention, to avoid avoidable disease
  • For years many have offered “pet portal” software to view your records from home (let me Google that for you)
  • Treatment decisions are entirely up to the client (though there are certainly haughty vets who don’t like to be questioned)
  • Cost is always a consideration
  • To her the “patient” is not the same as the client
  • and many more.

But probably the biggest difference is embodied in the excellent talk below, from TEDMED 2014 in Vancouver, in which a “people doctor” gets called to consult … at a zoo … and discovers a world of new insights that have changed how she practices.

The amusing thing is that Ginny has always joked about how “people doctors” only have to know one species – and often only one system in that specialty – while veterinarians have to know all the systems in all the species they treat. (Eyes, heart, teeth, kidneys, you name it… not to mention variations like a dog or cat uterus having two “horns” (forks).) That difference turns out to be a joke at the end of this.

It’s a thought provoking 18 minutes. Enjoy.  (Email subscribers, if you can’t see it, click here to come online.)

Here’s a link to the Zoobiquity conference she mentions, where vets and people docs share thoughts. That would be fun to attend. Check out the site – its banner asks, in sequence:

  • Do beluga whales get breast cancer?
  • Do dragonflies get obese?
  • Do pandas get eating disorders?
  • Do flamingos get heart attacks?
  • Do koalas get STDs?

Then, this … check out the intersection:

Zoobiquity screen shot: "Yes they do!"

p.s. This talk is part of a new list created on LinkedIn by Dutch colleague Lucien Engelen, 10 TED Talks that change(d) healthcare. You can read it there, or you can watch it as a YouTube list. But this one isn’t on that list.)

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“Activate your super-patient powers”: Public event (free!) at Brown next Monday

Superpatient flyer screen capture
Click to view & download the PDF (459k)

For years I’ve been saying that this movement won’t really be creating change until it gets out of the conference world and reaches Main Street. (Often I say we won’t really be getting there until the people you meet at the grocery story know what we’re talking about.)

So you can imagine how thrilled I am that Brown University in Providence, R.I. is supporting a first-of-its-kind grass roots event next Monday night, attached to a session I’m teaching the next day for one of their courses.

We’re playing with the idea of tying this to “how superheros got their superpowers” – the so-called “origin story,” like Peter Parker and his radioactive spider – to help people see that they may be capable of more than they realized. And in that context, we realized we have three different types of “superpatients”, who will present:

  • Acute care, like my kidney cancer – it came up suddenly (and now it’s over)
  • Chronic care – people who manage a chronic condition, like famous diabetes blogger Kerri Sparling (@SixUntilMe)
  • Crisis care – patients or caregivers who step up in a crisis and do everything they can to help, exemplified here by Pat Mastors (@PMastors).

These cases are all very different but they have a common thread: when patients get activated they can make a huge difference.
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This event all came together very quickly, so I apologize for the last minute nature of this notice. If you can come, that’ll be great. In any case, feel free to download this PDF or just send people this link.

If this gets great reviews, I hope to do more. If it doesn’t, we’ll fix it. Because from now on it’s “game on” – let the change take root!
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The course where I’m speaking is Brown’s Executive Master in Healthcare Leadership program – a year-long course for mid-career executives. Tuesday is their final session of the course. Thank you to Angela Sherwin and Judith Bentkover for their vision, and to Brown’s program for helping make this happen!