e-patients: How they can help us heal healthcare, chapter 1

e-Patient Dave joined this group in March 2008 thanks to an introduction by Danny Sands, MD, his primary care physician. Dave quickly established himself as the number one fan of the “white paper,” which we had edited and published after Tom Ferguson’s death. On his home blog, The New Life of e-Patient Dave, he noted that not everyone is ready to sit down and read the paper, so he would provide chapter-by-chapter summaries.

Here is the first entry and my reaction to it, as the editor of the first chapter.


e-Patient Dave:

Regular readers know I often speak of “e-Patients: how they can help us heal healthcare,” aka “the e-Patient White Paper.” I urge people to read it, but at 126 pages, it takes a commitment.

So I’m going to serialize it into seven chapter summaries, in the form of seven blog posts. Here’s the first.

e-Patients: How they can help us heal healthcare (PDF; wiki)

Published in 2007 by the e-Patient Scholars Working Group, completing the life work of Dr. Tom Ferguson

“[People] are suddenly nomadic gatherers of knowledge…
informed as never before…
involved in the social process as never before…
[as] we extend our central nervous system globally…”
–Marshall McLuhan, 1964 <==wow

Chapter 1: Hunters and Gatherers of Medical Information

This chapter lays the foundation for the body of the book, opening with two compelling stories of what we might today call “e-patient pioneers” – those individuals who, with no precedent, took matters into their own hands, embodying the e-patient idea that they (and you and I) have every right to know everything they can about their health – and sometimes they might even do a better job than the doctors.

Sections:

  • Edward Murphy’s incredible story of trying to get information about his condition – he had to impersonate his doctor (1994)

  • “An unusual sloshing sound inside her head”: Marian Sandmaier diagnoses her daughter’s severe headaches, when two specialists had failed to (1999)

  • Turning to Dr. Google: research from the Pew Research Center’s Internet & American Life Project, documenting that patient googling is now dominant: the great majority of Internet users look for medical information. (That seems obvious today, but it was radical and almost verboten when Tom Ferguson started his work.)

  • Three types of e-patients – the well, the newly diagnosed, and the chronically ill – and more Pew research on the different ways they use the Internet

  • “The Accepting, the Informed, the Involved, and the In Control”: an intriguing way of viewing different people’s Internet use based on their attitudes and how deeply in trouble they are.

    In that last section, check out Group IV: “…believe in making their own medical choices… will often insist on managing their own medical tests and treatments as they think best… may attempt to help to keep their clinicians up to date on new treatments and studies…. may start, manage, or contribute to local support groups, online communities, blogs… ” My my, which group am I in? :)

    Susannah Fox:

    First, I want to point out that Dave is the only person to gently ask us why the book is called a “white paper” when its cover is clearly black. It’s that kind of keen observation that endeared him to me right away.

    Second, after reading Dave’s summary, I am struck by how relevant DocTom’s insights are, even two years after his death.

    For example, the e-patient pioneer stories were favorites of DocTom’s and reading them now, they take on an almost mythological glow — that was then, this is now. I would even call them “e-patient ghost stories,” told to scare people who take information access for granted. But I would be willing to bet that there are still people who, when they hear hoofbeats, “listen for zebras” as Marian Sandmaier did, and face skeptical doctors who aren’t ready to hear about their theories.

    When I edited the chapter, I was able to update it with the Pew Internet Project’s latest estimates, which have not changed much in the past two years: 73% of American adults have access to the internet; 80% of internet users have researched health information online. I left in some of the historical citations that DocTom had included, such as a 2002 study about how patients looking for information about a medical procedure were twice as likely to go online as ask their physician. Suffice to say that the internet-related medical literature has grown exponentially.

    In many ways, Chapter 1 was the easiest assignment among them all since it had been written, revised, and discussed already for years. Plus it represents the 1.0 square in the Nexthealth diagram, the one almost universally acknowledged to be a reality for most Americans. My colleagues had the more challenging task of editing DocTom’s later, more complicated work. The later chapters reflect his vision of the next stages of development in participatory medicine. Some of the insights are still ahead of their time.

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    2 Responses to “e-patients: How they can help us heal healthcare, chapter 1”

    1. The e-patients movement could not have existed without the growing number of Health Information Gatherers.

      They are the cornerstone of everything else. Tom was incredible prescient when he wrote this early chapter. Everything in it has by now become the norm for many millions and so it is hard to imagine how disruptive his concept was when he wrote it.

      I believe we should collectively review it and probably add more contemporary stories to show how the new technologies and various online universes have helped people become more or less efficient hunters and gatherers.

      We now have to deal with the scourge of too much while we had to deal with not enough when we started talking about the White Paper. It is fascinating to see that moving from “too little” to “too much” has not changed our main problem. For many the appropriate information is still as hard to find!

    2. When speaking with mortals :) I’ve given up on calling it a white paper – I just call it a paper or a book (or “e-book”) and italicize its title as I do with any other book.

      I do use the term white paper when speaking with a community that knows the term, e.g. when meeting with the Mass Tech Leadership Council’s healthcare cluster.

      Methinks we need to take every aspect of our conversation out of the clouds and bring it to street level, where the people we’re aiding (ordinary folks in our lives) live and speak.

      Isn’t that what Doc Tom would do? Heck, when he was asked to talk to first graders, he asked them what they’d like to hear about, and I’m sure he spoke in their terms.

      Probably never told them he was writing a white paper, either.

      (I’m not saying we shouldn’t have profound thinking beyond the level of everyday discourse – just saying we ought to deliver something to the general public.)

      Recently I’ve been reflecting on the aphorism “Faith without works is empty.” In my view, something similar could be said about profound insights that never reach street level.

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