This 51 second animation accompanies my article last week in the BMJ, “From Patient Centred to People Powered: Autonomy on the Rise.” The video expresses, concisely, a slide that for years I’ve presented in 3-5 minutes. It’s an idea first published back in 2010 by Lucien Engelen, during the same time period when he was preparing for the TEDx Maastricht event in April 2011 where I spoke. It shows how the flow of valuable information has changed, which makes new things possible, as in all other parts of life.
From the BMJ article:
The change is illustrated by a visual model created five years ago by Lucien Engelen at Radboud University Medical Center in the Netherlands and Marco Derksen. It suggests that knowledge is like a nutrient that enables a more robust response, with the internet as its capillaries. Ultimately, knowledge flows through a network of networks, which makes it far easier to obtain optimal information on any clinical case and thus get optimal outcomes.
This doesn’t make patients oncologists. It does mean patients can truly know things they couldn’t in the past …
This approach is important in updating the culture of medicine. If we approach our advocacy by seeming to tell medicine “Everything you know is wrong,” it seems crazy, because it’s hard to become an MD, and experienced docs have seen thousands of cases, and have helped thousands of patients get better. To get that degree they have to learn a ton of science – so if we seem like we’re suggesting “You don’t know what you’re doing,” it sounds like we’re uninformed or just not thinking clearly. In medicine, either one is bad.
My approach has been to make the case – a sane, logical case – that relevant things have changed in the past generation. This reality doesn’t invalidate how things were, and it doesn’t mean those textbooks were written by fools. It may mean some textbooks need to be updated – but we need to make the case for that, using observations that others can understand. Otherwise it’s just an argument.
Lucien described the genesis of this diagram (above) in his recent LinkedIn post. I’d like to emphasize some additional points in the animation:
“Information is like a nutrient”
In the body, good nutrition enables a healthier, more robust response to life. Starve your cells and weakness is predictable. The same is true with knowledge for patients: as I said in Let Patients Help, “We all perform better when we’re informed better.”
A real problem happens when policy people don’t understand what’s changed. Look at the Belgian government’s 2014 TV commercial “Don’t Google it” – they suggest patients are childlike, naive, uninformed, and incapable of learning anything … which is ironic when their advice is to not try to learn anything. In my view, that’s perverted – as I also said in the book, “It’s perverse to keep people in the dark and then call them ignorant.”
(If you think what I said is anti-doctor, see Dr. Joyce Lee’s post about it on the BMJ blog.)
In contrast to that, see the patient stories – true stories – in that BMJ article. Or my own story, of how my oncologist says the internet may have helped save my life. Hey Belgium – deBronkart is a Belgian name!
“The internet is like capillaries”
This is the “plumbing” question, the answer to “But how could this be??” The mere existence of information doesn’t get it to where it needs to be; there must be a mechanism, some structure that letsit flow.
Twenty years ago all that knowledge lived inside libraries and was dispensed by the people who could access it; it was like a big oil pipeline, with centralized control. Today we have this crazy uncontrolled network of “blood vessels,” much more like capillaries.
But docs have told me that some people are still trained to think that’s not possible, and it’s not even right.for patients to know things that are taught in medical schools. Last year one patient on Twitter told me she introduced herself to a new doc by saying her condition was idiopathic (no known cause) and the doc snapped, “Who told you that word???”
That’s silly. Who wants a doc who thinks knowledge is not only impossible but inappropriate?
Web guru Tim O’Reilly is widely credited with popularizing this concept: “the read-write web,” as opposed to the “read-only” web. (Way back in 1994 you could read the web, but you couldn’t post anything unless you had servers and programmers.) Today anyone can post things – for better or worse – and the same is true for medical knowledge: other patients (not just scientists) can add knowledge to the internet. (The famous Health 2.0 conference is about “read/write healthcare.”)
As with everything else online, that means there’s garbage as well as gold – that’s what the Belgian commercial is about. What they missed, though, is that you can’t hold back the tide, and that people get better at filtering the junk they gain more experience.
As I said in my testimony in Washington years ago, “The solution is not to restrict and constrain. Empower the people: enable, and train.”
Closed systems vs. open networks
Finally, last year my Swiss client IKF pointed out that this is a classic example of the shift from a closed system to an open network, a concept that in computers is as old as networks themselves – decades old. Workflows and policies that are based in a closed-system paradigm will simply not work well – and certainly not optimally – when reality has become open.
Here’s to the visionaries. Let patients help.
Heaven knows healthcare needs all the help it can get: clinicians, hospitals and national health systems are overburdened. It’s crazy not to use every resource at our disposal – but to do that optimally, we need to understand how the world has changed. Thanks to Lucien Engelen for his vision in producing this five years ago and for this new animation, and thanks to the BMJ for hosting this as part of its 21-article Spotlight supplement on patient-centred care.