A quarter century ago, in the early years of the Web, a seminal book was published by four marketing wizards: The Cluetrain Manifesto: The End of Business as Usual. Its central point was that the internet was going to completely change marketing, because it made information flow freely, to and between consumers. Importantly, it consisted of 95 theses, patterned explicitly after the 95 theses Martin Luther nailed to the cathedral door in Wittenberg, Germany in 1517.
Luther essentially asserted that people no longer needed authority [the Church] to interpret the Bible for them: with the radical spread of knowledge through printing and education, people started to be able to read it themselves, and think for themselves. Similarly, Cluetrain said that the Web gave consumers access to unprecedented information: Thesis #1 was “Markets are conversations” … the opposite of one-way “read-only” brochures and ads.
In recent speeches I’ve increasingly focused on a comparable change we can no longer deny: if “Knowledge itself is power,” as Francis Bacon said, then we can no longer deny that the power structure in medicine is changing as knowledge spreads. I’ve called it “The Evolution of Who Knows What,” and it’s hot stuff, because it’s undeniable and it truly changes what’s possible.
This gives a whole new meaning to the impact of patient empowerment. Here’s a first try at a new framework for understanding it.
Access to knowledge is changing patient power
- The Evolution of Who Knows What:
- For centuries, doctors operated without science. Then for a while
only they had access to it. Today, patients no longer need to be in the dark.
- For centuries, doctors operated without science. Then for a while
- Medical Journals are No Longer the Only Useful Source for advice we value.
Sometimes they’re wrong, and sometimes we have other priorities! - Patients Who Pay Attention Can Be Much Better Informed Today.
With OpenNotes, we can see what you write about us. This empowers us. - Digital Health Means I Might Have Useful Data My Doctors Don’t(!)
It’s a world-changing power shift. - An Amazing Next Step is Happening: “Superpatients” sometimes invent
treatments that healthcare didn’t. It’s the dawn of a new age. - It All Springs From the Primal Urge to Survive and Be Healthy. Do not suppress us!
None of this is anti-doctor or anti-science. To the contrary, I call for participatory medicine, in which enlightened doctors, nurses, scientists and government policies welcome informed, empowered, engaged patients, helping healthcare achieve its potential.
The first signs are just the beginning.
Amazingly, Cluetrain was written when the Web was read-only: we couldn’t yet put stuff online, much less talk with each other via blogs and social media. So in 1999 email was almost the only way to talk with other patients for “peer health advice” (see Susannah Fox’s profound video). The phenomenon exploded when it moved to the Web – driven by the primal urge to survive and care for our families.
Today, the new FHIR health data standard is starting to help move our data around. This begins a new era in which patients and families will be better empowered to organize and manage their care – because they’ll have the information they need.
Such fundamental shifts truly change the world.
Martin Luther’s theses started the Reformation, which was an earthquake in religion. But it didn’t end there: the Reformation in turn put an end to the Middle Ages. That’s how powerful it is when access to information causes an evolution of who knows what – and when technology lets information spread.
The new reality is that empowered patients can contribute lots more than a generation ago. Let’s figure out how to make the most of it.
I love this take on the evolution of empowerment in health, Dave. Indeed, let’s make the most of it!
I am a medical anthropologist by training. The will to survive in spite of overwhelming odds (#6) and redefining who we are in spite of or b/c of our afflictions, differentiating abilities, diminishment and ultimately our deaths, is a distinctly human ability.
It’s great to meet you, Nadine. How would you as a medical anthropologist put this blog post in context, in its position in history, in the timeline of medicine?
Hi Dave, you know I’m a true believer and the Clue Train Manifesto is one of the “history of the internet” books on my shelf. However, in discussing this topic, we also have to account for medical mis, mal, and dis information. The people who took Ivermectin as a Covid treatment believed they were being empowered patients and challenging the medical establishment. And in the early stages of a change in treatment approaches, it is really difficult to distinguish signal from noise–ie, real and life-changing paradigm changes from those that are fueled by misinformation. I don’t know how we solve this problem but we need to both acknowledge it and work on it.
Of course! This is the hell of autonomy: becoming an auto driver brings risks that just don’t exist for non-driver/riders, etc. And of course this argument is EXACTLY what’s used by old-style paternal docs who say “Trust us and not anyone else.” The hard part comes when the paternals are wrong, journal articles are wrong, etc.
But that doesn’t change the thrust of the post.
I love how a post like this leads astute readers to share their experiences that might contradict. Case in point: my first wording in this post said that in 1999, *only* email offered peer-to-peer discussions. But Roxanna Guildford-Blake, a much-published medical writer, sent this correction:
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> in 1999 only email offered a way to talk with other patients for “peer health advice”
From 1996-2010ish, I was a member of one of several “cafes” and “salons” on the Web. Mine was run by the Utne Reader and was called Cafe Utne. (It’s still around: http://newcafe.org/) There were quite a few web-based salons like that in the early days.
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I was surprised, because the early Web (“Web 1.0”) was read-only: you couldn’t comment, publish a blog, etc. But googling about this today, I learned that VERY early blogging tools existed early on, and Wikipedia says commenting was first created in late 1998!
https://en.wikipedia.org/wiki/History_of_blogging#:~:text=After%20a%20slow%20start%2C%20blogging,to%20thousands%20of%20online%20diaries.
Roxanna added:
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it was a bulletin-board style system tweaked for the newfangled WWW. The program was Motet, a conferencing system for enabling written online group discussions. (If you are really curious, I found a description here: http://www2.webster.edu/~bumbaugh/motet/motwhat.html)
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So I adjusted my post to say email was *almost* the only way … apparently early patient discussions did exist. Thanks, Roxanne!
Yes! Love this new framework and the discussion it is generating. Thanks, also, for linking to that video, created with the help of Mike Evans, Mike Heinrich, and the Reframe Health Lab team.
As long as we’re adding historical context, I’ll remind everyone that the WELL launched in the mid 1980s and soon hosted peer-to-peer health-related discussions. The late great DocTom Ferguson was part of that early online community.
Again, thanks for framing this up in a useful way, Dave!