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.

“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.

 

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.)

“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!

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.
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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. Continue reading →

Notes for @BCPSQC #QualityChat Twitter chat

BCPSQC web logoFor Wednesday’s “#qualitychat” Twitter chat here are a few notes.

A few notes from participants at the February event

  • “The BC Cancer Agency has led a provincial project asking patients for solutions to some of the lower Provincial Cancer Care Patient Experience scores.  It is a project to listen to the patient voice and implement some solutions that came from patients and their families. … [We have been] inspired to come together as a province to have a provincial approach and also, look at solutions that patients suggest. ” Sue Fuller Blamey Corporate Director, Quality & Safety, Provincial Health Services Authority and BC Cancer Agency
  • Let Patients Help “was sent to all Community Engagement Advisory Network members … It is also a resource that we like to share in our day to day work now.” Saori Yamamoto Community Engagement Advisory Network Co-ordinator, Vancouver Coastal Health
  • “It really brought things back to the patient and showed us THEIR perspective on healthcare.  One thing that really stood out for me what the emphasis on including patients as partners in their own care, full members of the care team.  It challenged the all-too-common thinking that they are just unknowing recipients of the care that “the experts” decide is right for them and showed that, not only are many of them intelligent and able to participate in the conversation and decision making, but also (and perhaps more importantly), that they are real partners in it, with as much knowledge and information to share re: the “problem” as anyone else on the team.” From a Quality Improvement Consultant
    • Note how this echos the thinking of the Mayo Clinic’s chief residents in this post

Post-event summaries

In less than an hour, moderator @Kevin4Quality (Kevin Smith) posted the after-event resources!

Thanks again to all for a great event!

“A union of forces between providers and patients”: Mayo chiefs name a patient as 2015 Visiting Professor

Boy, is this a thrill: the Chief Residents at the Mayo Clinic have invited me to be their Visiting Professor in Internal Medicine next March.

A patient. As Visiting Professor.  Is that a sign of the changing times?? The announcement is being made today, during the patient panel at Mayo’s sixth annual social media summit. Here’s their post, including a four minute video interview.

Here’s their press release – their words – then I’ll discuss below.



“A union of forces between providers and patients”:
Mayo chiefs name a patient as 2015 Visiting Professor

Continue reading →

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
  • 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. Continue reading →

Speaker Academy #20: Message lessons from a video boot camp

Drew Keller at MayoThis 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.

I’m at the 6th annual Mayo Ragan Social Media Summit, in a session called Video Boot Camp. It’s conducted by former PBS producer Drew Keller, and his thinking about how to think out a video exactly matches my advice in this series on how to think out your speech.

Examples:
Continue reading →

e-Patient Request: colon cancer treatments, NYC area

Latest in the occasional series of e-Patient Requests.

A friend writes (anonymized):

Someone I know was just diagnosed with colon cancer. Yikes.

It seems to have been caught very early (routine colonoscopy, no symptoms) and she is now going through the genetic testing/biopsy/CAT scan stage over the next few weeks.

She asked me if I knew anyone who could tell me who the best drs (colorectal oncologist-surgeons) are in the NYC area. I’d deeply appreciate any advice you can give me for her. Thanks.

I don’t know individual doctors and I don’t know anything about colon cancer, but I know I’ve crossed paths with many of you out there. I realized that my Communities page has information about gut conditions IBD and celiac, but nothing about colon cancer. Help! I need two things:

  • Information on patient communities, to add to my page.
  • General advice on how to decide who’s “the best doctor” (which leads to the question “what is ‘best’?”)

And let’s add a third:

  • What-all does a newly diagnosed patient need to know, to get oriented? For me it was reassuring to know the actual odds, first-hand, from others who were in my situation – other patients. (Plus, a lot of their advice didn’t exist on medical websites.)

I’m hesitant to ask for specific recommendations here, because advice from strangers may not be worth much; I know first-hand that in a good community, advice is cross-vetted by a larger number of people. So I’m most interested in that.

If you want to offer the friend specific recommendations, please email me via my Contact page.