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.

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.
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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

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BMJ and Mayo blogs published two of my essays today

A quick note as I prepare to leave for my very exciting Mayo Clinic visit next week – unexpectedly, today two new posts went live on other people’s blogs.

Mayo Clinic Social Medial Health Network:
Social Media is the Profound Change Fueling the e-Patient World

Transformation of Knowledge Access

Click to enlarge

I’m on the Mayo social media center’s External Advisory Board, so I’m required to write something yearly, and this was it – timed to coincide with my trip next week, though I didn’t know they’d time it this closely.

An important part of this post is the illustration – an updated version of a graphic I’ve used for years, highlighting that medical knowledge has shifted from being a closed system to an open network. This concept is widely known in high tech, but can seem downright alarming to people in medicine. I don’t fault them – it’s their training, and the idea of a  closed system carries with it great responsibility. But it has changed, and it’s important to understand.

Please read the post (it’s not long) to understand the increasingly apparent impact this change is having on the practice of medicine. Please.

Not coincidentally, the graphic was first created by Dutch colleague and now friend Lucien Engelen, who conceived and produced the TEDx Maastricht conference where I did my TED Talk four years ago. And the first version of this graphic was produced a year before that, back in 2010. Thought leadership is thought leadership.

BMJ blog:
“Precision medicine” needs patient partnership

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Proposing a science of patient engagement, #3: The role of unexplained observations

Cover of Structure of Scientific Revolutions 50th anniversary edition#3 in a series. Previous entries:

#1: Proposing a new science of patient engagement, including the four minute interview video that defines the need for the project.

#2: The stages of a scientific field: Thomas Kuhn’s framework for how a field becomes a science organized around a paradigm, and then, sometimes, realizes that “anomalies” mean the paradigm is no longer sufficient to serve the field’s needs.

The purpose of this project is to examine whether medicine needs to become more methodical – more scientific – about what we mean by patient engagement, and what factors determine how well it works.

The role of unexplained observations

Science depends on its findings being … dependable! Section 2 of Structure, “The Route to Normal Science,” begins:

In this essay, ‘normal science’ means research firmly based upon one or more past scientific achievements, achievements that some particular scientific community acknowledges for a time as supplying the foundation for its further practice.

Let’s add line breaks and boldface, to spotlight the elements of thought:
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Proposing a science of patient engagement, #2: The stages of a scientific field

Cover of Structure of Scientific Revolutions 50th anniversary editionRevised March 12, adding Hacking’s “structure” passage.

This is #2 in a new series “Proposing a new science of patient engagement,” using the landmark 1962 book The Structure of Scientific Revolutions by Thomas Kuhn as its framework. If you haven’t read the first entry, please do, including its dozens of comments, which have links to valuable ideas and resources.

In an upcoming post I’ll lay out briefly why it seems this project is needed. I say “seems” intentionally; this must be a shared exploration. As I said in #1,

My goal is … to have science move forward methodically in its thinking. Maybe we need a new science – a new way of understanding what needs to be measured and optimized – or maybe we don’t. I just ask that we examine the evidence together.

This post will lay out, briefly, the stages Structure describes for the progression of science. I’m doing this first because that framework provides the context for my assertion that we have a problem – a scientific problem in the field of medicine – that may require formally (and rigorously) changing our conception of who is capable of what in the patient-clinician relationship.

As you’ll see, a shared conception of how things work is exactly what a paradigm involves.

Kuhn’s view of the progression of a science

From Ian Hacking’s widely praised introduction to the 50th anniversary edition of Structure:

Structure and revolution are rightly put up front in the book’s title. Kuhn thought not only that there are scientific revolutions but also that they have a structure. …

Here is the sequence: (1) normal science…; (2) puzzle-solving; (3) paradigm…; (4) anomaly… (5) crisis and (6) revolution, establishing a new paradigm.

Going a bit deeper on some of Kuhn’s core concepts:
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