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??

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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

 

 

Added later: on Twitter a number of frustrated Canadian patients expressed surprise at this, because of their own difficulties in the Canadian system. I’m obviously in no position to disagree – in hindsight, this post (which is indeed favorable about my specific encounters) may sound like things are perfect there. They’re not, as I said in the second sentence. That’s social media for ya.

But, what I did say here (about my experience) is just what I meant to say.

Some of my best events in the world have been in Canada. Things aren’t perfect there, by a long shot, but since they’re free of the enormous financial pressures of the American system, they’re focused on actually delivering care, and they’re years and years ahead of most of America at taking care of people.

This brief post is about two related events.  In February I spoke in Vancouver at the British Columbia Patient Safety and Quality Council.  About 10% of the audience was actual patients – something I’d seen earlier at the Saskatchewan Health Quality Council and at Kingston (Ontario) General Hospital. (In general, Canada wins the Patients Included badge bigtime.) That event was a keynote (standing ovation) plus a “roll up the sleeves” workshop the next day: “Okay, let’s go: where do we start?”

To further spread the message to people who weren’t there, here’s a link to their page where they posted the video and slides. (Some of the slides are edited into the video, but I move too fast, so they wisely posted the slides separately!)

Then something special happened: a neighboring group, Vancouver Island Health Authority, decided to kick it up to the next level.  So I’m headed back there – less than five months later – for another event, at Island Health. They’ve been on a five year journey, totally admirable, with major cultural transformation that’s already a reality, and they’re still working at it.  So it’s truly an honor to be invited back to work on their leading edge.

Here’s an inspiring video they produced about that journey.

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