e-Patient Dave

Power to the Patient!

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August: “retreat and think”

Cover of Structure of Scientific Revolutions 50th anniversary edition

For the month of August I’ll be mostly offline, for a period of “retreat and think.” It’s not a full-bore vacation; I can still be reached for anything time-sensitive (see my Contact page) but I’ll be less active online.

This year has already been full of change – Ginny’s knee replacements, Visiting Professor at Mayo, the first Patient Engagement Fellowship, new publications, and most of all, rethinking what “patient” means (and could mean), per the book that made paradigms famous: The Structure of Scientific Revolutions (right). Our movement is gaining traction, which means a change agent needs to rethink. This month is good for that (I’m only traveling to one event), so I’m going to dial back the dialog.

September will be amazing.

One reason to retreat now is that on August 28 the calendar flips from empty to packed.

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Writings and upcoming events – July 2015

Like last month, here’s this month’s update on travels, events, and articles (including a first for me!).

In my travels if you’re in the area and want to connect, contact me.

Writings:

  • Do you use online symptom checkers? Go for it but be wise: Last Friday I was interviewed by the Boston Globe (see below) to comment on a new BMJ article. It was such a stimulating topic I wrote a much-mentioned post about it on e-patients.net, and I hope to be writing more

Media mentions:
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“Being heard as possibility”: my talk at #RebelJam15 (Speaker Academy #25)

Helen Bevan 'outwitted' slide
My closing slide, stolen from the NHS’s remarkable Helen Bevan. Video of my talk is below.

This post includes the video, below, of an unusual speech for me: it’s not about healthcare, it’s about speaking – particularly, how to compose your message in a way that people hear (genuinely) as a new possibility for the future, not a complaint about today; and so that they come away from your talk with a new view of life.

In healthcare transformation this is really important, for two reasons. First, a lot of people are just sick of hearing over and over about the problems (which certainly are real!). And second, since most of the problems haven’t budged much in the past 20 years, it begs the question: have we been wasting our breath??

And that leads to the question I blogged last year: “What could be said that will make any difference??”

Then two weeks ago I wrote that Rebel Jam 2015 was about to happen – a full 24 hour, round-the-clock round-the-world webcast event sponsored by RelEvents and conducted by three different groups working to create real change from within the system: Change Agents Worldwide, Corporate Rebels, and Rebels At Work. I said my favorite expression of their approach is to figure out how to “rock the boat without falling out.”

I was one of their speakers, and I just got my hands on the video of my talk. Below. Caution; this may require that you give up some of your ideas on how to make a point and how to create change. It’s my approach, for what it’s worth.

Rebel Jam Webcast – e-Patient Dave: “Being Heard as Possibility: How a patient became Mayo’s Visiting Professor” from e-Patient Dave deBronkart on Vimeo.

Next in the series: #26: To hone your skills, eight great TED Talks

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Upcoming events & media – June 2015 edition

Clip art of newspaper boy
Public domain

This spring I had a couple of cases where people said “I wish I’d known you were coming – we could have had coffee!” (That’s always compelling to me…) So I’m going to try publishing a monthly update (more or less) of upcoming travels, newly added future events, and maybe a few other things. Short & sweet. Thank you to Casey Quinlan, a focused production machine if I ever saw one, for making this happen!

Underway now:

  • June 7-13, Lucerne, Switzerland: IKF’s annual Swiss tour. Multiple keynotes and private meetings.

Upcoming travels & webcasts

Recently added events (stay tuned for details!)

  • Early September: Europe (to be announced)
  • Mid September: 10 day tour of Alaska! These people are getting it bigtime and spreading the word!
  • September 23-24: Medicine-X | Ed Bringing e-patient thinking to the medical education curriculum!
  • November 4, DC: American Psychological Association Presidential Innovation Summit
  • November 11, Sacramento: Transforming Healthcare Summit

My first-ever article in a clinical practice journal where I’m listed as First Author(!)

  • “Open Visit Notes: A Patient’s Perspective and Expanding National Experience,” in ASCO’s Journal of Oncology Practice. It’s open access (free), to allow reading and sharing by patients.
    • Full text, or PDF of the print pages; article extract page here.
    • Thank you to Beth Israel Deaconess OpenNotes team, and to the journal for making it open access.

Recent media mentions:

 

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Join us at NEHI’s “Innovation in Oncology” in DC, May 27

Oncology event invitationThis an open invitation to a free event in Washington, Wednesday morning, May 27, sponsored by NEHI, where I have my patient engagement fellowship. Anyone’s welcome, but a key focus is how new insurance payment models will affect cancer patients, so I particularly encourage patient voices, and especially people who are interested in how insurance plans affect patients.

Register here on the NEHI site. (Scroll down on the page.)

From the event page: (remember, this is about payment innovations, not new treatments)

As alternative payment models emerge in areas like oncology, it is critical to explore the impact of these new models on patient access to innovation. The stakes are high for patients, clinicians, innovators, and the system at large.

Join us for a multi-stakeholder roundtable to explore how new payment models will impact patient access to innovation in oncology and what policy actions are needed to sustain innovation.

I’ll have more to say (more background information) about these payment innovations as the day grows closer. One place to start is this 90 minute webinar recording from last August.

Event format

This kind of NEHI event is highly interactive. A panel of seven (see agenda page; I’m one) will hold two 75-minute discussions with much Q&A from the audience. Moderator is Tom Hubbard, NEHI’s vice president of policy research – a great guy – very knowledgeable, approachable, and personable.

Why patient presence matters

As I say over and over, “patient needs and perspectives” are now an official priority in healthcare. The Institute of Medicine said it in 2012:

A learning health care system is anchored on patient needs and perspectives, and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.

NEHI gets this: You can’t include the patient perspective if patients aren’t there. For years patient advocates have appealed to meeting organizers to have patient voices at the table – not just talked about, but actively in the discussion. If you as a patient, or your organization, is interested in this subject, register and come to this half day event.

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Mayo’s “Healing Words” program – reading from “Facing Death – With Hope”

A month ago I posted about my trip to the Mayo Clinic as Visiting Professor, and noted that the morning before my Grand Rounds lecture, I went into a video studio and recorded a reading about facing death, from my first book, Laugh, Sing, and Eat Like a Pig. (The title is explained in the video.) Here’s the video. (Email subscribers, if you can’t see the video, click the post headline above to come online.)

As I noted in the previous post, this was recorded for Mayo’s “Healing Words” program for their in-patient TV channel, produced by Mayo’s Dolores Jean Lavins Center for Humanities in Medicine (@MayoHumanities on Twitter and on Facebook). The first 25 minutes are discussion with host Jacque Fletcher about the book and about my experience of facing death. Then there’s an 8 minute reading – the section that later became my tiny second book, Facing Death – With Hope, then Jacque closes the program, talking about the therapeutic value of patients blogging.

As always, looking at it afterward, it doesn’t look polished enough – but it was done in one take, with no rehearsal, no mirror to see if my hair was okay:-), and – for those who’ve been following my fitness saga on Facebook – it’s pretty obvious that my clothes had become too big! (The shoulders on the suit are an inch down the arm, you can see air between the shirt collar and the neck… oh well!)

But it was real, and I hope it will be of value to future viewers. I’m pretty sure that those of you who lived through those months in 2007 with me will be reminded of what that time was like. Words will never express the value of your support back then – but they don’t need to, because we know it was real.

Thank you to the Humanities department for this production, and thank you especially for granting permission to present it outside of Mayo.