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CCCC conference announces inaugural class of palliative care e-patients

Patients Included badge with TMGuest post by SPM member Liz Salmi of CCCC, an organizational member and supporter of our Society for Participatory Medicine. Note also (at bottom) that this event provides a model for other organizations to follow: patient participation is enabled by a foundation grant.

Montage of the e-patients

From left: Cindy, Debra, Elizabeth, MarlaJan, Kathy

In our society, talking about serious illness and death and dying is often difficult. Having these discussions is not a common experience for most of us for numerous and complex reasons. It’s hard to talk about death and dying when it is generally a culturally taboo topic.

Knowing that there are options towards the end of life, such as palliative care and hospice, may help make these conversations easier.

For the first time, the Coalition for Compassionate Care of California [an organizational member of our Society] is excited to welcome e-patients to participate as equal partners in our 8th Annual Palliative Care Summit on May 12-13, 2016, in Newport Beach, CA. The Summit will be keynoted by e-Patient Dave.

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You Won’t Believe What Medicare Just Did on Patient Engagement!

DVD cover of the BBC’s 1967 “Dr. Who” episode. (Click to view “The Macra Terror” episode’s Wikipedia page.)

Quick summary for the impatient: Michael’s post urges public comment in the upcoming comment period, and ends with this: “If we in the patient community do not raise questions and objections to this critically important MACRA rule, you will definitely not believe what happens next.” – e-Patient Dave

Sure, I’ve always wanted to write a clickbait headline that sounds like a promo for the bastard child of Buzzfeed and the Federal Register. But, seriously: you will not believe what Medicare just did about patient engagement in a draft new rule dramatically changing how doctors are paid.

And, depending upon the reaction of the patient community, you definitely won’t believe what happens next.

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White Paper Introduction: “Tech is changing how we think about ourselves” #DocTom10

Next in our #DocTom10 series, which started here. If you haven’t read about Tom’s preface, and the Foreword by Pew Research, we urge you to. Remember, this was all written a decade agoToday, Tom’s introduction. Please discuss!

Atomic Robot Man - Japan, 1948


The key question we must ask is not
what technology will be like
in the future, but rather,
what we will be like…
—Sherry Turkle


I collect old toy robots. My Atomic Robot Man robot (Japan, 1948), shown [here], is a personal favorite. For many years I didn’t understand the powerful hold these dented little metal men maintained on my imagination. One day I finally got it: They show us how the culture of the 40s and 50s imagined the future. Cast-metal humanoid automatons would do the work previously supplied by human labor.

That wasn’t how things turned out, of course. read more…

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“Extremis”: new Netflix documentary on end of life with Dr. Jessica Zitter

Zitter NY Times screen captureWe’ve often written here about palliative care and end of life. (The two are not the same: you can have palliative care without having decided the end is near.) They’re, in a sense, the ultimate expression of patient-centered care, forcing the question: who gets to say what’s the right thing to do?

One of SPM’s newest members is Dr. Jessica Zitter (@JessicaZitter), author (right) of a post last week on the New York Times “Well” blog, with a recent story of a patient who was clearly dying. It ends:

I believe we did right by our patient. We acknowledged that we couldn’t save her, and resisted the urge to treat her untreatable disease — and instead treated her suffering.

The photo shows Dr. Zitter in a short new documentary on the subject produced by Netflix, “Extremis,” that’s being featured at Robert DeNiro’s Tribeca film festival, underway now.

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#DocTom10: Foreword by Pew Research – astounding statistics from Y2K

Pew Research 2000 statistics for ForewordNext in our #DocTom10 series, which started here. Today we resume our review of the chapters of Tom’s White Paper.

This Foreword stands on its own, with no comment needed, so we’ll just paste it in verbatim.

Note: these numbers are from 2000, when the Web was just six years old! E-patients have been e–patients a lot longer than skeptics believe.


By Lee Rainie and Susannah Fox
The Pew Internet & American Life Project

It gives us great pleasure to recommend this white paper—and its author—to everyone interested in understanding how our first generation of e-patients is slowly but surely transforming our healthcare system. For we have learned a great deal about the emerging e-patient revolution from its author, Tom Ferguson, and from his team of expert advisors and reviewers.

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Susannah Fox: Tom’s legacy #DocTom10

Susannah Fox MedX 2015Next in our #DocTom10 series, which started here

This is a blessing – the first post here in two years by Susannah Fox. More about this at the end of the post – for now, let’s get to the good stuff. She originally posted this as a comment on Friday’s post by John Grohol.

Thank you, John, for sharing those memories of Tom. I am envious of your email hoard! I wish I had access to my correspondence with Tom.

I’d like to share my personal reflection of Tom’s legacy and what we can learn from him, still. This was a comment I wrote on my personal blog, in response to someone who asked, with understandable frustration, why Tom’s ideas from the 1970s, 80s, and 90s are still not mainstream:

Tom’s vision has not yet been fully realized. But it does continue to emerge.

You can catch glimpses of it, in pockets of the country, such as when OpenNotes was rolled out and, “after 12 months, 99% of patients wanted to continue to have access to their notes online and none of the doctors decided to stop the practice.” (BMJ, 2015) read more…


Warmly Remembering Tom Ferguson & His Legacy #DocTom10

Remembering Tom FergusonNext in our #DocTom10 series, which started here

I first met Tom Ferguson in 1994 online (where else?) when he reached out via email to chat about online support groups. I was still in graduate school at the time, and he had come across my indexes of Internet support groups for health and mental health concerns. He was writing a book (“Health Online”) and wanted to better understand these kinds of self-help groups.

Tom Ferguson was a voracious inquirer and accumulator of knowledge, with a wonderful sense of humor. His brain seemed like it was full of millions of facts and ideas that he was always excited to share with you.

Tom was also a great disruptor of the status-quo. He understood that could best be done by bringing like-minded people together from different fields and perspectives to help change healthcare.

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Remembering Tom’s death 10 years ago today: #DocTom10, post 4

Next in our #DocTom10 series, which started here

Ten years ago today, Tom Ferguson died unexpectedly. He was in the hospital at the University of Arkansas for Medical Sciences (UAMS), being treated for multiple myeloma.

Tom’s work back then was captured on his website,, which has been preserved and is still live today. Here’s a screen capture.

Screen capture

From the site’s About page:

Pioneering physician, author, and researcher Tom Ferguson, MD (“doctom”), recently honored as an “Intel Internet Health Hero,” has been studying and writing about the empowered medical consumer since 1975 and about online health resources for consumers since 1987. In 1993 he organized the world’s first conference devoted to computer systems designed to be used by medical consumers.

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#DocTom10, post 3: The preface and the paradigm

Cover of Structure of Scientific Revolutions 50th edition

50th anniversary edition. Click to view book on Amazon

Third in our #DocTom10 series, which started here

Yesterday I asked that you download Ferguson’s white paper, the manifesto he was working on when he died unexpectedly, ten years ago tomorrow. Today we’ll look at the preface.

The lost section: questioning the paradigm

When I first read the White Paper in January 2008, this section was missing. When we updated it in 2013 with a new addendum, the preface surfaced and was restored.

What blows my mind about this is that the original White Paper had already changed the thinking of many of us, but it wasn’t until much later that I started thinking, “We need to formally examine our paradigm of what ‘patient’ is – our cultural assumptions about what patients are capable of,” which led me to dig in to the 1962 classic The Structure of Scientific Revolutions by Thomas Kuhn – the book that introduced “paradigm” into popular use. And what are the first words in Ferguson’s long-lost preface?

In his groundbreaking work, Thomas Kuhn identified two contrasting types of scientific work. The first, normal science, involves the gradual accumulation of knowledge within a dominant professional paradigm that is still timely and effective. …

But there can be a dark side to professional paradigms as well. Since observations, approaches, and strategies that don’t conform to the accepted tenets of the dominant paradigm are typically ignored, denied, or explained away, an outdated paradigm can insulate a professional community from new developments that are “off the radar screen” of their customary ways of thinking.

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#DocTom10, post 2: Please download the White Paper / Libro Blanco

White paper 2013 thumbnail Spanish white paper thumbnailYesterday, in Honoring the memory of “Doc Tom” Ferguson, ten years after his death, we started a series of posts to mark his untimely demise and look back on his work.

As we noted, at his death he was working on a project funded by Robert Wood Johnson’s Pioneer Portfolio to document the reality of, and the rationale behind, the e-patient movement. Today, a full decade later, the movement is barely known, but we’ve made progress: in many circles (not all), patient engagement and empowerment are recognized as a growing reality, and in some countries policy is changing to support it.

In the coming days we’re going to walk through this document chapter by chapter. If you want to follow along, please download it: it’s 129 pages in English, and the original text (not updated) is in Spanish, 148 pages.

Here’s the table of contents:

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