We’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.
Next 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.
Next 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)
Next 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.
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, doctom.com, which has been preserved and is still live today. Here’s a 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.
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.
Yesterday, 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:
“Doc Tom” Ferguson, the source of our Society for Participatory Medicine, died unexpectedly ten years ago this week, April 14, 2006. In the coming days we’ll run a series of posts remembering his work and vision.
Especially, we’re going to walk through the seminal document about this movement, the now-famous “e‑Patient White Paper,” a free download in the right sidebar of this site. Funded by Robert Wood Johnson’s Pioneer Portfolio, the White Paper was well underway at the time of Tom’s death; his friends and followers finished it, and published it a year later.
Tom was a true visionary: he saw that the internet had caused a fundamental shift that would make new things possible, and he correctly predicted what we should expect to see. Then he started spotting people doing what he foresaw, and brought them together to talk. More on them later.
For starters, consider this: Tom published this pair of pyramids, contrasting the difference between “industrial-age medicine” and “information-age healthcare.” Click to enlarge, and look at the difference – healthcare turned on its head:
SPM member Sara Riggare is a PhD student at Karolinska Institutet in Stockholm and a member of the BMJ’s Patient Advisory Panel. She has Parkinson Disease, and is highly proactive in dealing with it. One thing some Parkinson patients do is non-contact boxing, e.g. the Rock Steady program, and Sara has often posted pictures and videos on Facebook of herself doing it.
Well, appearances can be manipulated :-). Last week she was on the front page of, she says, “a special issue on healthcare digitalization published by a Swedish weekly newspaper called Today’s society. The headline says ‘The new kind of patients challenge healthcare.'”
Ain’t THAT the truth. :)
The text inside (according to Google Translate, anyway) says:
Somehow I’d never heard of National Doctors’ Day, but apparently it started 25 years ago, in 1991. As one of many SPM members whose life was saved (or is being helped) by excellent physicians, I’m in!
And I want to shine a broader spotlight on the wider class called clinicians (Wikipedia): all sorts of medical professionals who work directly with patients, including nurse practitioners, nurses, aides … see that Wikipedia link for a list of many types.
A side note: this particular “Twitter card” was taken from a tweet by the American College of Radiologists. That’s the group we wrote about last week, who’s sponsoring a “hackathon for open access” to medical journals. That subject – figuring out how to help all of us harvest the most clinical value from research – will be a key enabler of full patient-clinician partnerships.
Speaking of those full relationships, I’ll close with a special note of thanks to the many researchers who generously share their work in process with e-patients. For some reason lately I’ve been thinking about – and talking about, in speeches – e-patient Judy Feder, a metastatic breast cancer patient who prolonged her life 18 months thanks to the four e-patient communities she belonged to. On BCMets she learned about a new blood test that got her access to an unusual use of Herceptin. That story is in our post a year later about her demise.
For her, the extraordinary value of achieving the best in medicine was that she and the next generation of her family got to spend a precious extra 18 months together.
Here’s to the best of medicine; no, here’s to the best of health. It works best when patients and clinicians each contribute their utmost – participatory medicine. So Happy Doctor’s Day!