e-Patient Dave

Power to the Patient!

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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.

 

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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.

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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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