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May 12, 2015 By e-Patient Dave Leave a Comment

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.

Filed Under: Events, Innovation Leave a Comment

April 30, 2015 By e-Patient Dave 12 Comments

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.

 

Filed Under: Best of 2015, Events, public speaking 12 Comments

April 21, 2015 By e-Patient Dave Leave a Comment

A call to action and two new media items

NoMUwithoutME badgeThese are busy times! I haven’t posted anything in over weeks so I’m going to handle three items in one.

1. Call to action: “No MU without Me”

Two weeks ago, two important things came up in the Washington health IT policy world. On the e-patients blog I wrote two posts about them, which I encourage you to look at.

Post 1: “No MU without ME”: join the campaign to fight health data hiding

This is an important post, getting lots of attention. Two important DC policy items in this post –

  • A proposed rule change to roll back current requirements for hospitals to help you to get your data.
  • Meanwhile, ONC (the federal office that for health IT policy) sent a report to Congress saying that some system vendors and some healthcare providers are “knowingly interfering” with the transfer of patient record data. Knowingly interfering!

The result is that a national day of action has been proposed, because a primary complaint from hospitals is “Look, nobody even asks for their information. Why should we have to automate delivering it??”  (Read the post for more precise specifics.) Stay tuned. Meanwhile, a social media campaign has started: “No MU Without Me” – it’s explained in the post.

Post 2: NY Times editorial on forces who “knowingly interfere” with health info exchange

On Sunday the Times ran an editorial on the subject, spotlighting that the ONC report had noted “business interests” as the cause of the data obstruction. In my post I said, pretty pointedly:

Restricting flow of patient information is not a valid playground for private business interests.

If you have a story about how healthcare was helped or harmed by access to your (or your family’s) records, let me know so we can add it to the story database we’ll be collecting.
[Read more…]

Filed Under: Events Leave a Comment

March 29, 2015 By e-Patient Dave 3 Comments

First post from Mayo: “Radical Acceptance” on Healing Words, and singers Kim & Reggie

Healing Words studio shot 2015-03-25Last week, Monday night through Wednesday, was my long-awaited visit to the Mayo Clinic, invited by their Chief Residents in Internal Medicine: Dr. Chris Aakre, Dr. Luke Seaburg, Dr. Luke Hafdahl, and Dr. Kimberly Carter. It was a wholly different event than most, because although it included some speaking, the whole feeling of the event was for us to learn from each other over the course of those ~48 hours.

In the next day or two I’ll post the video of my Grand Rounds lecture, which was on the “new science of patient engagement” idea I recently proposed here. But first I want to talk about two connections with the Center for Humanities in Medicine. (Does your hospital have one of those? Mayo’s is on Twitter at @MayoHumanities and on Facebook.)

Facing Death

[Read more…]

Filed Under: Events, public speaking 3 Comments

February 18, 2015 By e-Patient Dave Leave a Comment

Kool & the Gang’s “Celebrate” on Jib-Jab – for my birthday

JibJab birthday screen captureOn JibJab.com, from my sister, the jazz singer Suede, to augment my 65th birthday post this morning: One of my all-time favorite party songs, “Celebrate,” customized with faces of my family peeps. From left to right below: (Email subscribers, click here)

  • My granddaughter, y’all!! Zoe
  • Some guy who just turned 65 TODAY.
  • My daughter Lindsey
  • My wife Ginny (bustin’ moves like she used to do, before her bone problems)
  • Lindsey’s husband Jon

Filed Under: Events Leave a Comment

February 18, 2015 By e-Patient Dave 19 Comments

I’m 65! That’s *really* old (you’ll be amused) – and I love it.

Birthday candles (source: Wikipedia)
“Birthday candles”. Licensed under CC BY-SA 3.0 via Wikimedia Commons

Updated – see modified population graphic

Some people moan about adding years. I love ’em. Today I’m 65, and I want lots more! I wanna get old!

We the old and many
are coming for you!

Did you know more than half the humans who’ve ever been 65 are alive today? That’s partly because medicine keeps saving people like me, who tried to die in middle age. Thanks, medicine; now get ready for lots of us getting older, happily, with chronic conditions. (I myself have slightly elevated blood pressure, and I’m just emerging from “obese.”)

Like my classmate Jay Pollack, who posted on Facebook that he’s getting a pacemaker because medicine saved him twice in ten years.

Have you thought about my question last September about taking care of all the old people?  Or how about Pew Research’s new book Next America, which depicts among other things how America’s classic “age pyramid” is becoming rectangular? Each band in the graphic is a five year age group. We used to have very few 80+, and now it’s commonplace: (Graphic modified 10pm ET)

[Read more…]

Filed Under: Best of 2015, Events 19 Comments

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