e-Patient Dave

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Daily Digest: Monday, February 2, 2015

 

Welcome to a new feature: the Daily Digest, by my friend and fellow SPM member “Mighty Casey” Quinlan, of Richmond, VA. Her Facebook feed and Twitter feed are so constantly full of things I’d missed that I thought “Shoot, let’s post that!” So this month, Monday through Friday, she’ll post links to what she thinks are the best/hottest/most interesting healthcare, medicine, and bio-science stories that day. Here she goes:

Yeah, there might even be some humor, since we’re both fans of Gomerblog and ZDoggMD.

Today’s crop:

  1. The human brain is a fascinating instrument. This piece from the NY Times’ Well blog looks at the impact price awareness has on the placebo effect. The outcome is both surprising, and not surprising at all. “Expensive Drugs Work Better Than Cheap Ones“
  2. Are minute clinics, where patients can walk in for quick care on stuff like strep throat or flu shots, better patient experiences than care at a regular primary care practice? Geriatrician Dr. Leslie Kernisan had the opportunity to compare two of her own experiences, which she shared on The Health Care Blog: “A Tale of Two Sore Throats: On Retail Clinics and Urgent Care“
  3. How far would you go for medical care? Would you go all the way to Thailand? Morgan Spurlock, the guy behind “Supersize Me,” now has a CNN series called “Inside Man,” where he looked at the rise of medical tourism in the face of rising U.S. healthcare costs. “Surf, sand … and surgery? Inside the world of medical tourism“
  4. Our friends at Symplur, the healthcare data visualization gurus, asked and answered a great question on their blog recently about patient communities and New Year’s goals. Christopher Snider posted this, and it’s a great read. “Looking Forward to Looking Back – How Do Patient Communities Approach New Year’s Goals?“
  5. Connected health and quantified-self have gotten a lot of ink, both physical and virtual, over the last few years. With the rise of self-tracking tools, from Fitbit to AliveCor to Scanadu, patients with chronic conditions and early-adopter tech mavens are monitoring their physical status with more and more granularity. Can connected health penetrate the “actual medical practice” membrane? Here’s a list from The Doctor Weighs In blog: “Five Accelerants to the Adoption of Connected Health“
  6. Because we mentioned humor, and Gomerblog, and ZDoggMD in our intro, here’s a three-fer: a post about Turntable Health, ZDoggMD’s new comprehensive care clinic in Las Vegas, on Gomerblog. It’s not a new post, it dates from May of 2014, but it is definitely worth a read for the laughs. NOTE: this post is SATIRE. “Big Pharma and Mega Hospitals ‘Scared Beyond Belief’ of Tiny Las Vegas Health Clinic“

That’s it for today – check back tomorrow, we’ll have a fresh list of must-reads for you!

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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!
[Read more…]

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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.

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Speaker Academy #19 (getting paid), cont’d

Update Nov. 20: overnight I received a courteous and complete reply. The funds have now been sent, and my bank seems to have been part of the problem, since a month ago. It would have been useful to know that – without that information there was no way for me to help. I’ll update again as the situation proceeds.
__________

This 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.

In #16 (January) I said “For a small business, cash is king.” Then in June, #19 was titled: “What’s up with expense checks??”  To a small business (like a patient starting a speaking business), this is no small issue, and any event that wants to say it’s patient-centered needs to see things from the patient’s point of view. In #19, citing a then-current overdue item, I said:

I’ve used my own methods (very specific communication) for months now, and it’s not working. So, starting tomorrow, I’ll do the blogging that I said (in #16) I’ve never had to do: I’m going to paste in the entire email thread from the current worst offender, with no names attached. And if the money hasn’t arrived by Friday, the names get added. (Their next scheduled check run is Thursday, and I’m sure they know how to use Fedex.)

All those past due items cleared up within a month, through diligent management of each item (by my assistant Kristin and me). That takes more time, costing my business extra resources – exactly as described in #16: they keep the money, I lose interest, and I also expend more to get what they owe me. Most definitely a case of one party not keeping their side of the deal.

But today I received one of the worst examples ever. [Read more…]

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How great and bad “experts” treat you in Mac care – and lessons for medicine

Henry Feldman
The great: Dr. Feldman (no photo of Eli is to be found!)

For the past year I’ve had a disastrously bad experience as a Mac user, to the point where I had long Facebook discussions on how to select a Windows “ultrabook” – super thin and light, like my current Macbook Air. The final (at last!) happy outcome, just last month, shows the difference between two things that are vital in medicine too:

  • Capable wizards vs clueless goons
  • A caring approach, listening to the person who has the problem, and honoring his (my) observations and concerns.

Ultimately a friend at Beth Israel Deaconess (a doctor!!), Henry Feldman, and his colleague Eli Kaldany, figured out what my problem was – in August, nine months into the problem. (They saw me bitching on Facebook.) They nailed the problem in less than an hour. And, ironically, when another problem happened in September, I finally found someone capable at Apple – and discovered a bit of news I’ll share in a moment. [Read more…]