e-Patient Dave

Power to the Patient!

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Slides and links for today’s presentation to Rotary Club of Seattle

Seattle Rotary web bannerUpdated 9/29 with the promised additions

Seattle has the world’s biggest Rotary Club – a lot of sharp, focused Seattle business people. Very different from my usual talk to a medical conference … I’m talkin’ to these people as patients and family members! So the content is different, and some is new this week.

Here’s the video (32 minutes):

Seattle Rotary #4, September 24, 2014 on Vimeo.

Two notes about the video:

  • The fonts didn’t upload correctly so some of the layouts overflowed. (30 years into desktop publishing and they still can’t make it work reliably!) An accurate PDF of the slides is on Slideshare.
  • Around 31 minutes I say that I’ll post my call to action online: our society needs mid-level managers who know how to create a team and produce a result! They’re on slides 50-56.

As promised, links to material cited in the talk:
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Another unmentionable: Who’ll take care of all the old people?

After reading this, be sure to read the comment from KP doc Wes Lisker.

This is for the “Unmentionables” panel today at Health 2.0 in San Francisco.  Susannah Fox blogged about this now-annual panel, which gets into “the real barriers to good health — all the stuff that nobody wants to talk about but which we know is at the center of people’s lives – and the future of healthcare:

We talked about financial stress, birth control, sexually transmitted diseases,how to increase physical activity among tweens, smoking cessation, how clinicians can have an authentic voice online, and supporting overall behavior change (just to name a few).

For today’s panel she asks for new unmentionables. Mine ties in to her previous post, “Prepare.”  It’s quick – please go read it, and especially note the amazing animated graphic that shows how the age mix in our population is shifting astoundingly as boomers age and don’t die.  Because medicine has gotten really good at saving lives.

Health 2.0 co-owner Matthew Holt @BoltyBoy pointed out it’s even more alarming if you add in the growth in population.  I decided to do that – I did some clumsy screen grabs and added some notes. Result:

1. The shift in percentage by age group:


2. Add the growth in US population, and add a blue bar on the side that shows the number of people 85+:


Who’s going to take care of all the old people??

The cost of assisted living and skilled nursing facilities ought to scare the crap out of you – as should the risks caused by the reality that people try to defer more care.  I commented on Susannah’s post with links from a Boston Globe article this Sunday about disasters in local assisted living places.

Who’s going to take care of all the old people??

 

 

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Request: true stories of where patient engagement in the chart made a difference

Vermont IT Leaders logoI’m giving a talk in Vermont next week, to health IT workers, and in talking with the organizers we realized it would be great to give them a vision of WHY we’re doing this – some true stories of where patients benefitted from seeing the data in their chart.

(By the way, the event is open to the public, and is just $99, an amazing deal. Among the speakers will be Karen DeSalvo, head of ONC.)

Anyone??  It could be yours, or one you’ve seen in the press.  I blogged about it on e-patients.net and have started collecting answers there.

You can post your own stories, or just go read what reality is in health IT these days – can you say “Let patients help!”?

 

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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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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 FKDV.se)

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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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