e-Patient Dave

Democratizing Healthcare

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“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!

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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!

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How early should patient voices be heard in the research process?

Timeline graphic - when to involve patients?
Click to enlarge. Graphic by Bettina Ryll, MD/PhD, Melanoma Patient Network Europe (MPNE) in EORTC patient course 2014

I’m in Madrid at the ESMO Congress, “the European ASCO.” (ESMO is the European Society for Medical Oncology; ASCO is the American Society of Clinical Oncology, and its annual conference is huge, as is ESMO’s – over 18,000 attendees.)

Yesterday I led a session titled Meaningful patient involvement in clinical trial endpoints, and a couple of slides stopped me in my tracks. (If you don’t know the term “endpoints,” see discussion below. In short, it’s what they decide to measure, to see if a treatment is effective.)

The first slide here (click it to enlarge) points out a disconnect: the yellow triangle shows that today, patients are mostly involved toward the end of the process – after someone has decided what should be studied, and designed a trial to do that. At bottom right, in the blue band, we see that in this model the patient’s role is “doing things right.”

But the creator of this slide is German doctor Bettina Ryll (living in Sweden), whose husband died of malignant melanoma. [Read more…]

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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:
[Read more…]

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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!”?