e-Patient Dave

Power to the Patient!

Search Results for: "best care at lower cost"

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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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WSJ: “Researchers are asking patients to help design clinical trials.”

Screen capture of Wall Street Journal

I could smack myself for not noticing this earlier, but it happened while I was at the ESMO conference in Madrid last month: Amy Dockser Marcus has another great piece on how medicine is truly starting to engage with patients as active contributors to improving healthcare. Woohoo!

The lede:

Scientists regularly sign up patients in clinical trials to test new treatments. Now, they are seeking patients to help them design some of those trials.

Patients and researchers can bring different perspectives to treating disease …

Doesn’t this dovetail deliciously with the presentation I blogged about, in my previous post?? Imagine: Scientists asking patients what they think is important! It seems clear that medicine is starting to act on the Institute of Medicine’s mandate in Best Care at Lower Cost:

A learning healthcare system is anchored on patient needs and perspectives.

Clearly, science is starting to act on the realization that patients are no longer the passive recipients of what scientists think.  (It also matches nicely Laura Landro’s front page WSJ piece in June, “Health-Care Providers Want Patients to Read Medical Records, Spot Errors”.

This is a major shift in the wind, and it’s spreading. Watch for more of this in the coming months.

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“The system is squandering value in medicine” – guest post on West Wire

Click to visit the post on the West Health site
Click to visit the final post on the West Health site

West Health is a new initiative funded by Gary and Mary West, four separate organizations (read about them here), pursuing innovations in healthcare. The parent organization has a new blog on patient perspectives, “West Wire.” The first post on July 9 was an interview with friend / colleague / attorney Donna Cryer, then they invited me to submit a post.

I chose to blend the Institute of Medicine’s report Best Care at Lower Cost (which said our health system must be “anchored on patient needs and perspectives”) with California-style disruptive innovation, which is about serving the customer perspective. Their final post is here (edited to fit their word count); my original full text is below. My wording is more in-your-face than I usually am, but I chose my words thoughtfully, and I mean it.:-)
_____________

The system is squandering value in medicine.
Disrupt! Disrupt! Disrupt!

[Read more…]

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Finally! Composite video of my call to action at Blue Button Plus Developer Challenge (New York, July 22)

Blue Button Plus event artLast month I blogged that a “lost speech” had finally surfaced. It was my closing speech at an event last July, and said why this moment (this year, this series of conferences) is an essential turning point:

“The event was a conference conducted by our Department of Health & Human Services to educate and encourage software developers about the “Blue Button Plus” initiative. … which is really important for the future of health IT, and not just in America; this innovation initiative will change what patients and families are capable of.”

And I said:
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My view of patient experience: “care that’s more caring.”

Pat Rullo of Speak Up and Stay Alive RadiOh! (Twitter @SpeakUpRadioh) is writing a piece for the Association for Patient Experience, whose board chair is Dr. Jim Merlino, Chief Experience Officer at the Cleveland Clinic. (Jim and I had a 7 minute hallway interview at TEDMED 2012; video is at bottom of this post.) Pat wrote, asking “your personal definition of the patient experience … It can be one word – one sentence – or as long as you choose. What does the patient experience mean to you?”

I get a million requests like this (“please write something for us”), and mostly I have to say no, because my backlog of broken promises and overdue blog posts is embarrassing. But I responded to this one because

  • It’s a short, focused question
  • It’s directly aligned with thoughts I’m already working on
  • I can blog the result. :-)  (That’s a method I learned years ago from the amazing Ted Eytan of Kaiser.)

Here’s my response: [Read more…]