Friday: It’s #RebelJam15! Much to learn – and FREE! (Speaker Academy #24)


This is an important, free opportunity for all those who want to change the world to learn from people who have experience.

This is the latest in the Speaker Academy series, which started here

I first encountered the “corporate rebel” movement in Saskatchewan two years ago. It was an unexpected, unscheduled pre-conference by Helen Bevan of the UK’s National Health Service – a dry run of a half day workshop she presented a week later in London. Her thoughts were so fresh, relevant, and potent that I almost fell off my chair. I mean, look what I tweeted, mid-session:

We connected instantly: at the break I approached to introduce myself, and before I got there she threw out her arms and said “Dave!” The following week in London, at the BMJ / IHI Quality Forum, she delivered the full half day workshop to a room of 200 – three hours long – and got a standing ovation. Have you ever seen anyone get a standing O after three hours? (I blogged about it on Forbes, and linked to a Storify of some live tweets during the event.)

Speaker Academy students, note: this movement is about rocking the boat, not sinking it. (Helen says it’s about “rocking the boat without falling out.”) Think about that, seriously. Would you like to develop your ability at that? Would you like to hear from people who are effective at it?

This Friday, June 26: “Rebel Jam”

Rebel Jam is a live 24-hour “jam session” (via Webex) with speakers from around the world, particularly from three organizations: Corporate Rebels United, Rebels at Work, and Change Agents Worldwide.  My half-hour session is at 4:30 pm Boston time. Below is the information each of them posted on their websites (e.g. the Corporate Rebels United post). Register, browse the subjects, listen live when you’re awake, and watch the recordings later.

On Friday, June 26 at noon Central European Time, we will kick off our 24 hours of speakers sharing stories, observations and emerging practices about creating change and reshaping the future of work.

We will be using WebEx for this on-line event

Log-in information

Link to schedule of speakers and topics

Kickoff times for 24-hour online event

  • Europe (CEST): noon
  • United States (EDT); 6 a.m.
  • United States (PDT) 3 a.m.
  • Australia (EST): 8 p.m.

Twitter handle: #RebelJam15


Relevents LogoProduced by:

Change Agents WorldwideCorp Rebels United jpeg Print

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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:


Dr. Molly Coye joins NEHI!

Dr. Molly Coye headshotLong-time readers know that my work is going through something of a transition, with one foot in the “grass roots / we ain’t got nothin” world and the other foot in the “BMJ author / Mayo Visiting Professor / NEHI patient engagement fellowship” world. Long-time readers also know I’m nothing if not candid, so while it’s thrilling to be moving into more dignified circles, there’s still a part of me that reacts to news like this by just saying:

OMG: Molly Coye is joining NEHI!

Molly Joel Coye, MD MPH (@MJCoye) has left UCLA’s Global Lab for Innovation in Health and has become NEHI’s new Social Entrepreneur in Residence. Why am I excited? Who is Molly Coye? Well:

  • An elected member of the Institute of Medicine, which I often quote, she was a co-author of their most-cited reports on medical safety & quality, To Err is Human and Crossing the Quality Chasm. (This makes her a goddess, on my planet.)
  • From NEHI’s announcement: “Dr. Coye has also served as Commissioner of Health for the State of New Jersey, Director of the California State Department of Health Services, and Head of the Division of Public Health Practice at the Johns Hopkins School of Hygiene and Public Health” [and much more]. (And on top of her medical work, she has “an MA in Chinese History from Stanford University, and is the author of two books on China.”)
  • From UCLA’s announcement: “Under Dr. Coye’s leadership, the Institute for Innovation and the Global Lab have been tremendously successful and productive. Among the many important projects overseen by Dr. Coye and her team are included the Doximity Colleague Connect pilot, the Zipnosis online diagnosis and treatment service, the Vivify Health Remote Home Monitoring Platform, the Virtual Visits pilot project, the Patient Voice user experience-based design approach to value-based care, and the launch of Real Time Referrals and eConsult.”
  • From the iHealthTran blog in 2013: “She received the Information Technology Innovator Award from HealthCare Informatics and was named one of the 25 Most Influential Women in Healthcare by Modern Healthcare Magazine. Elected to the National Academy of Sciences’ Institute of Medicine in 1994, Dr. Coye co-authored two landmark reports on healthcare quality, To Err Is Human and Crossing the Quality Chasm. She also chaired the IOM’s Committee on Access to Insurance for Children, and co-chaired the Committee on Patient Safety Data Standards.”
  • Finally, I asked the members of our Society for Participatory Medicine (patients and clinicians) if any of them have first-hand experience with her, and within a few hours got these responses:
    • “She is on my ‘good-guys’ list”
    • “I’ve worked with her … She is thoughtful, well organized, and pleasant to work with.”
    • “Sincere and an extraordinarily diplomatic ambassador.”
    • “delightful to work with and an amazingly competent person”


I like innovation, optimism, brains, insight, and practical experience. And as I blogged about NEHI when I first got this fellowship, NEHI is action-oriented – not just a “think” tank, a “think-and-do” tank. They’re about “evidence, action, and policy impact.” Thanks too to the Commonwealth Fund – as the NEHI release says, “Dr. Coye’s work will be supported in part by a grant from The Commonwealth Fund.”

So this will be fun. And productive, I’m sure. Life is good.

My comment submitted for Meaningful Use Stage 3 last week

"No Meaningful Use without Me" badgeThis is long but if you’re interested in patient data access I hope you’ll find time to read it. Something important is afoot in federal policy.

Updated 6/4 – added a link to a doctor’s blog post

Over on, the blog of the Society for Participatory Medicine, for weeks there have been blog posts about an important moment that’s happening right now in Federal health policy.  The details are complex and geeky (imagine that, with Federal policy) but here’s a tiny tiny nutshell, for readers of this blog:

  • In the 2009 federal stimulus bill (not as part of Obamacare), billions of dollars were designated to help doctors and hospitals finally computerize.
  • To get the money, they have to not just buy the system and let it collect dust; they have to put it to “meaningful use” – “MU,” as it’s often known.
  • Not surprisingly, what you have to do to get the money is a topic of hot debate and much lobbying.
    • Remember your civics class? The Legislative Branch writes a bill, and then in the Executive Branch, regulators write the regulations that put the law into action. The regulators get to say specifically what’s legal and what’s not. (See, lobbyists aren’t just on Capitol Hill – they talk to the Executive Branch too.)
  • An important part of this discussion for several years has been whether they have to give you and me our data that’s in their systems. Basically: can they use those systems to create your medical record, hoard it (keep it from you), and still get their federal reimbursement??

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“The unfolding science of patient engagement”: foreword in a new book

Photo of the foreword pageIn 2013 I was interviewed during the creation of a book called Person-Centered Care, part of a project called Co-Creating Healthcare produced by Danish firm Sustainia and the German firm DNV GL. It’s a remarkable project – a series of three substantial books, all distributed as free downloads on the project’s site. (They also have print editions, but I don’t see any way to buy one!)

In January they completed the third phase of the project, a series of roundtables in Europe, China and the Americas: The State of Healthcare: From Challenges to Opportunities. I participated in the Washington meeting, and they asked me to write a foreword for the final book, which was released last month.

Because the foreword focuses on the “defining a new science of patient engagement” theme I’ve been writing about, I want to re-post it below.

As you can see by browsing the books on the project site, the whole Co-Creating Healthcare project is amazing in its depth (and the beauty of the book spreads), so I’m just thrilled that for the foreword of the final book, they chose this idea. Thank you!

The unfolding science of patient engagement

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Speaker Academy #23: First, get into *their* world (presentation at CGT)

This is the latest in the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to speak on a subject but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.

I co-presented Saturday at the 15th annual Conference for Global Transformation (CGT), a talk that was very different from any other I’ve done, because the context wasn’t healthcare per se – the context this time was, well, global transformation. This year’s theme is “Listening for Workability.” I haven’t discussed it much, but this company’s principles form the foundation of my approach to communication, which is a big part of this series.

This was a very short talk, because after my co-presenter (neurologist Dr. Rochelle Frank) spoke from her perspective, we got into discussion with the whole group, to see what they see as newly possible. I don’t think I’ve ever seen so many hands go up – because that’s what this event is about: new possibilities.

(I’ve padded out the slides here, for more clarity as a standalone slide deck. Dr. Frank and I were greatly assisted in planning this session by another clinician, nurse practitioner Lorin Bacon.)

Nerve alert: this advice may not be easy to hear, especially for people who’ve been harmed or have suffered great loss, as many of our patient voice friends have been. But I implore you to review #6 in this series: What could be said that would make any difference? There isn’t much point in saying anything else, is there?

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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.

Speaker Academy #22: Diary of an invited speaker :)

visiting speaker screen grabUpdate: I’ve edited the post’s headline because the original came across completely wrong. If you saw that one and were put off, rest assured – so was I when I saw it later!

The occasional Speaker Academy series, which started here, provides a bit of free advice (worth every penny) for patient voices who know how to give a good talk and want to make a business out of it. Today’s informative edition is a post by Edinburgh professor Geoffrey Pullam on the Chronicle of Higher Education‘s Lingua Franca blog: Diary of a Visiting Speaker.

He chronicles the 37 hour trip he took recently to deliver a two hour speech with Q&A, “over and above several days of lecture preparation. Don’t get me wrong, I like visiting new places and giving invited lectures, and this one was eminently worth doing. But being a visiting speaker is hard work.”

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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.


Washington Post: “How is the doctor-patient relationship changing? It’s going electronic.”

WaPo article 04-26-2015It appears the Washington Post is getting seriously interested in both the value of, and the consumer perspective on, health IT. This is a good thing, because (a) the whole purpose of healthcare is to take care of patients, (b) patients (that would be you) are the ultimate stakeholder, (c) no patient can contribute their best to their care if they can’t see the information, (d) nor can any doctor or nurse do what they’re trained to if they don’t have all the information, and (the good news) (e) we all can do better if we have the information.

This is not some crazy call-to-action from the fringes: it’s mainstream. I mean, three years ago the Institute of Medicine (the pinnacle of medicine in America) said medicine depends on “Patient-clinician partnerships” with “Engaged, empowered patients” and must be “anchored on patient needs and perspectives.” And, as my primary physician Dr. Danny Sands often says, “How can patients participate if they can’t see what I see?”

Tuesday’s Post has a pair of articles by Suzanne Levingston. I’m quoted in the first, and Dr. Sands is quoted in the second:

How is the doctor-patient relationship changing? It’s going electronic (above, ~1500 words) is a broad survey of how medicine’s landscape has altered because you and I have the internet, which means we can for the first time in history connect to two pivotal resources: information we could never see before, and each other. (My own story, including how the internet helped saved my life, is on my About page; it was also published in the British Medical Journal two years ago.)

WaPo 2 2015-04-28There’s lots of health-care technology out there. How do you choose? (490 words – a sidebar, I presume) is a brief overview of the wide range of apps and info tools available today. As regular readers know, I view these tools as exactly analogous to the hundreds of desktop publishing tools that became available in its early years: examples of what can be done when data gets free, not all of which should be done, or even has any reason to get done.

But that’s the whole point: when information gets loose, innovators all over creation get to try things – at their own risk, with their own investment – and we-all out here get to make up our own minds about which of it is worth anything. The world shifts. As I’ve often said, “To innovators, data is fuel.” And I’ll never forget Todd Park (the US Chief Technical Officer) shouting from the stage, “Data Liberación!”

Also quoted in the bigger article are my respected colleagues Susannah Fox and Wendy Sue Swanson MD. Fox is widely felt in healthcare circles to be the wisest observer of what you and I actually do online (a debunker of many myths, with facts and heart), and Seattle pediatrician Swanson is almost legendary for her sober, reality-based, compassionate advice to parents in today’s ever-changing world.

Also cited is Dr. Eric Topol, who wrote the introduction to Let Patients Help, which I co-authored with Dr. Sands, and which is now in 7 languages (and a Chinese company just bought the rights). I’ve just finished reading Eric’s new book The Patient Will See You Now, which goes very very deep and wide into these articles’ topics. I hope to review it soon.

More later on why these realistic articles are important at this moment in time. Because just as with the rise of desktop publishing, and just as with Topol’s book, not everyone is happy with the coming change.