e-Patient Dave

Power to the Patient!

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Exponential technology is reaching medicine. No, really.

I’m going to do something unusual (for me) – drop a video in here and not try to explain much about it. It’s about the future but don’t have any particular prediction, except that things are going to be changing really fast, as in scary fast. So you might want to loosen up your thinking. (I’m not affiliated with any of this; these are my own thoughts.)

Fair warning: this will look like lunacy, and I won’t get into big arguments about it here. You might want to watch this a minute at a time, perhaps pausing every time the whiteboard gets erased – it’s too much to take in all at once.

This is also the world depicted by my friend and colleague in Budapest, Dr. Bertalan Mesko (aka @Berci), who calls himself a “medical futurist.” Unusual, huh? Well, you can’t look at today’s medical reality (as amazing as it is) with the same mindset as you can with the “exponential” mindset.

Why do I think this is valid?

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Opening the ICU doors to family: report from Virginia Mason

Screen capture of article top
Click to view article PDF (open access)

On Twitter tonight I learned from Dr. Sachin Jain of a November article that should be of interest to all of us who want to work toward full patient and family engagement in all aspects of medicine. To be sure, the changes we’d like are not always simple, and one example is expanding family access to the ICU.

Virginia Mason Medical Center (VMMC) is widely known for being far far more patient-centered and quality-oriented than most medical institutions – including, in this case, even the really challenging parts.  I hope I don’t get in copyright trouble for pasting too much in here, but the whole article is Open Access (no charge) so have a look, under the heading “Problem: Despite tradition, genuine need to open doors”:

Over time we became more aware that this traditional model was badly disconnected from the needs of our patients. The Institute of Medicine emphasized that families serve as a healing influence by providing comfort, connectedness, energy, self-esteem and wisdom; there is little or no evidence to indicate that the practice of family member presence is detrimental to the patient, the family or the health care team. Indeed family member presence during invasive procedures or resuscitation should be offered as an option to appropriate family members.

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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.

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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.