e-Patient Dave

Democratizing Healthcare

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June 12, 2015 By e-Patient Dave 4 Comments

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

  • June 16-17, Chicago: NEHI’s National Healthcare Innovation Summit. Attending.
  • June 17, London (via web): The King’s Fund, Digital Health Days Congress. Speaker.
  • Link to come next week: June 26, 4:30 pm New York time, webcast: 20 minute speech “Being Heard as Possibility,” part of Rebel Jam, hosted by Rebels At Work, Corporate Rebels United and Change Agent Worldwide.
    • I love this group! I first learned about them from Helen Bevan in 2013 and blogged about this movement on Forbes: The “Organizational Radical” Movement Comes To Medicine
  • June 29, London:
    • Private corporate event
    • BMJ patient panel gathering

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:

  • Book: The Digital Doctor: Hope,Hype, and Harm at the Dawn of Medicine’s Computer Age by Bob Wachter (April 2015)
  • May issue of ImproveDx: Newsletter of the Society to Improve Diagnosis in Medicine. In “Improving Communication of Test Results in a Changing World” by Susan Carr.
  • May 30, IntrepidNow: #TalkHIT with CTG – Dave deBronkart (ePatient Dave), The Original ePatient Advocate
  • May 28, AstraZeneca Health Connections: E-Patient Dave: “The Internet Brings Patients Together”
  • May 14, Mayo Clinic “In the Loop” “‘Healing Words’ Program Creates Space for Patients to Reflect and Clarify” about my interview on facing death with hope

 

Filed Under: Business of Patient Engagement, Digests, Events, public speaking Tagged With: #gmdd, epatient, participatory medicine, patient engagement, Society for Participatory Medicine, update 4 Comments

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

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