Talks in Stockholm, part 2: “Dagens Patient” workshop at Karolinska Institute

This talk, last Wednesday in Stockholm, was for a significantly more academic audience than I usually face: A packed room at Karolinska Institute, the university that is the home of the Nobel Prize. The purpose in this case was to kindle some significantly new thoughts in a super-sharp audience: 20 researchers, 10 patients, 5 students, 5 healthcare professionals, academic think tank leaders, leaders in healthcare professional bodies, 5 health care professionals , 7 health care designers. A lot of people also had more than one role. Wow!

The event was part of an important Karolinska project called “Today’s Patient” (“Dagens patient”). It’s got e-patient written all over it. (This is a continuation of last Thursday’s post of my talks Monday and Tuesday at Digital Health Days in Stockholm. The closing panel video is up now.)

Email subscribers, if you can’t see the video, click here to view it on YouTube. 

(How about the nifty video editing by Anders Westin?? I don’t know how he did some of that magic! For fun he also created another “mash-up” of the song Gimme My DaM Data and photos from the day – I’ll add that at bottom.)

At the start you’ll see the introduction by Karolinska’s Pär Hoglund and Sara Riggare. Pär is, among other things, one of Sara’s academic supervisors. Sara is a Parkinsons patient (highly activated e-patient) and member of the Society for Participatory Medicine; she was the ringleader of this invitation, as she also was for my World Parkinson Congress talk, which I blogged about last November.

As I said, the purpose in this case was to kindle some significantly new thoughts in a super-sharp audience of academics and innovators in the Swedish system. Did it work? Well, yesterday I learned that they’ve decided to translate my book Let Patients Help into Swedish. I’d say that’s a win.:-)

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On the road to Medicare, part 2: comic relief:-)

If you can’t see the video, click here to open it on YouTube.

Second in a series of posts as I approach Medicare in February. Part 1 was here.

Thanks immensely to long-ago co-worker Harry Zane, now an experienced Medicare participant, for this 15 minutes of standup comedy. I didn’t just laugh out loud; I hooted.:-)

The “comic” is Fritz Coleman, who (it says) is an icon in LA broadcasting – longtime weather person. Say hi to him on Twitter at @FritzNBCLA.

They did some odd editing in random places, inserting pictures of conference participants on top of the video, with no connection to what he was saying. Don’t let it throw you – enjoy. (My favorite was the smiling young nun whose face appeared as he was describing his 95 year old mother!)

Talks in Stockholm – the Land of Nobel

I’ve been traveling (and recovering) enough that I’ve not blogged as much as I want. I’ll weasel out of that:-) by posting some videos. Here’s the first post.

Digital Health Days – Stockholm
(20 minute opening keynote,
tying our movement to the history
of the Nobel Prize in Medicine)

This is almost a completely new talk. Stockholm is the home of Karolinska Insitute, which is the home of the Nobel Prize. On the day before my talk, wife Ginny and I went to the Nobel Museum and looked at the exhibits about the winners of the Nobel Prize in Physiology or Medicine.

Trying to do the opening keynote for a two day conference in twenty minutes is a bitch of an assignment, frankly. I left 1/3 of my talk in the hotel room (not enough time) and still had to skip 1/3 of my slides. For this audience, my talk touched only lightly on my cancer story – I quickly jumped into lessons I found in the Nobel stories. My intent was to convey:

  • The world truly has changed. The nature of how we know things – and can know things - is different from thirty years ago.
  • Even in the best of establishment medicine, resisting change has sometimes cost us decades of progress. Beware of this. Be open to new realities.
  • Patients are the ultimate stakeholder. They have the most at stake, and can contribute real value in new ways.

My voice starts out dry and scratchy – speakers, don’t forget to hydrate!  (Subscribers, if you can’t see the video, click here to view it online)

Other resources from the event:

(I was blown away by how fast the videos were posted!  My talk was at 9:30 a.m. and it was edited, with slides, and posted on YouTube by lunch!  The conference world has much to learn from this AV team from

Six month countdown to Medicare! What do I need to know?

65th birthday cake by Oana Go (Germany). Click to view project on Craftsy.

65th birthday cake by Oana Go (Germany). Click to view project on Craftsy.

Yesterday I blogged about my business’s fifth birthday … and this week, it turns out, marks six months before I turn 65!

And that means I go on Medicare.

I’ve learned enough in these five years to know at least two things:

  • You’re a patsy if you think the American medical system will necessarily take care of you. It might, but if it does, it may be in the process of making itself a boodle of money.
    • Yes, there are many exceptions – individuals and organizations who care and who work hard. But I’ll repeat: you’re a patsy if you sit back and assume the system will take good care of you.
  • When it comes to money in American healthcare, don’t expect anything to be explained clearly.
    • 18 months ago I blogged about a famous policy paper, Hospital Pricing in America: Chaos Behind A Veil of Secrecy by Princeton economist Uwe Reinhardt. That paper was published 8 years ago, and hardly anything has changed. (The title of the article is real and not an exaggeration.)
    • In 2013 I lived the chaos and the veil myself, in my own shopping for everything from CT scans to shingles vaccines to skin cancer treatments. I saw at close range that Reinhardt was not exaggerating, and I blogged it in a series called  “cost-cutting edition.”

There are signs of hope, such as ClearHealthCosts, but although I work for change, I’m not waiting for the posse to save me.:-)  I’m gonna be pro-active, engaged, empowered, responsible! I want to get educated, because I’ll be on Medicare for the rest of my life. And I want to approach the education from the patient’s perspective … not what the system wants to tell me, but what people like me have found necessary.

So, you who’ve been through it: what do I need to be aware of? What choices will I need to make?

I do know these things about Medicare: Continue reading →

I’m 5! (Well, is…)

5th birthday candle

By Andrew Eick on Flicker. Licensed for re-use with attribution.

It is a time of celebration.

Since creating this domain five years ago (2009!) I’ve done:

  • 242 speeches
  • 36 panels
  • 30 policy meetings
  • 68 participant in other events
  • 18 countries

and authored or co-authored:

  • 304 blog posts (including this one)
  • 7 posts on my Forbes blog
  • 472 posts on (and 106 more on that site, before this “birthday”)
  • Two books: Laugh, Sing and Eat Like a Pig and Let Patients Help: A Patient Engagement Handbook (with Dr. Danny Sands)
  • Seven articles and papers (BMJ, iHealthbeat, SGIM Forum (twice), Aspen Institute booklet, Patient Safety & Quality Healthcare, ACM Interactions)

and acquired on social media:

  • 21,400 more Twitter followers
  • 2,000 Facebook friends
  • 500+ LinkedIn connections (they won’t seem to say more than that!)
  • Klout impact score of 80
  • … while spending $0 on traditional advertising.

And 150 media mentions.

Well, that explains a lot… I couldn’t have done it without you people paying attention and spreading the word. Thank you!

And, looking forward…

… stay tuned for tomorrow’s post on what’s next in life.


It’s the 2014 MITSS “Hope” award season. Nominate! Attend!

MITSS HOPE award logoIt’s that time again!  I’ve attended this event three times, and I’m always touched and moved by how many good people have responded to a real setback – a medical “adverse event,” as they’re so euphemistically called.

MITSS is Medically Induced Trauma Support Services – for both the patient victims of medical accidents (including family) and the clinicians involved, for whom accidents can be severely traumatizing too.

MITSS founder Linda Kenney almost died from an all-too-possible accident … a local anesthetic got into a blood vessel and stopped her heart; she woke up three days later in an ICU. Out of that experience – and the healing that eventually happened with both her family and the involved anesthesiologist – she started MITSS. Linda won’t call herself a hero, but I will … same for her partner, Winnie Tobin. (They’re on Twitter as @MITSS_Support.)

Do you know someone who’s responded to such an event by Supporting Healing and Restoring Hope?  That’s what the MITSS HOPE award is about.  The process isn’t hard – you just write a 500-1000 word essay, and fill in a form as described here.

Please participate.  Here’s a bit more, from the award’s home page:

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US News: 10 Tips from Empowered Patients. (Mine: the basics of empowerment)

Screen capture of US News web headlineLast week US News & World Report ran a “slide show” (series of short pages) with tips from 10 empowered patients. They’re all good – I recommend you go read them. (Click the graphic, or click here.)

Knowing that other patients would be giving lots of tips, for mine I decided to focus in mine on something that’s been on my mind a lot lately:

We’ve learned that the patient movement shares patterns with other cultural awakenings. Who knew?

I’m 64 years old. In the ’60s I learned that step one of empowerment is to know what you want. Step two is consciousness raising: Realize who’s saying what to whom, and what assumptions that might imply. Perhaps it’s what you’d like; if not, step three is to ask for it. 

Enlightened patients (and clinicians) know that nobody knows everything – neither patient nor clinician – and approach it as a partnership, in what we call ‘participatory medicine.’

It feels a little odd to be teaching empowerment principles (which I learned in college long ago) to a mass market audience, but increasingly I see this is what we need to do.

This is no small issue – it’s not just about patient rights per se. If people haven’t thought about what they want, and haven’t become conscious of what’s happening around them, and haven’t asked for what they want, then when advocates request change, earnest physicians have every right to say, “Look, my patients aren’t asking for this.”

So think about what you want, and see whether things are going the way you want.  That applies both in a hospital and in a doctor’s office – anytime you’re tending to someone’s health, including your own.

“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!

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There’s something about Canada: patients, empathy, quality and action.

Patients Included badge

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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Interview on WebM&M: “What could be said that would make any difference?”

WebM&M screen grab

Click to go to the interview

Sometimes the wheels turn slowly. Last August I was invited to be interviewed for “WebM&M,” an online feature that I’d frankly never heard of. The invitation said

I’d like to invite you to be a featured interviewee on the topic of “The Role of Patient Advocacy in Patient Safety” for AHRQ WebM&M, the online case-based journal on medical errors and patient safety. The Web site represents the federal government’s major effort to educate practicing doctors and nurses about patient safety. Together with its sister site AHRQ PSNet, AHRQ WebM&M gets nearly a million visits annually. You can visit the site at

WebM&M is managed by Bob Wachter MD (blog, Twitter Bob_Wachter), with whom I’ve crossed paths a few times; I described his work and my impression in a post here a while ago, and let’s just say I’d jump at anything he recommends. So we did the interview, and it faded away into the backlog of things being processed (by somebody else :-)).

Then a few weeks ago, up popped the transcript, ready for review. A few quick edits, and voilá: In Conversation with…Dave deBronkart (“e-Patient Dave”). It includes an 8 minute excerpt of the audio.

Honestly, I’m thrilled to have been invited to do this. Thanks to Bob, to AHRQ (the Agency for Healthcare Research and Quality) … and to every single one of the clinicians and patient advocates whose thoughts and advice in these past seven years have given me these thoughts.

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