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that don’t conform to the accepted tenets of the dominant paradigm are typically ignored, denied, or explained away, an outdated paradigm can insulate a professional community from new developments that are “off the radar screen” of their customary ways of thinking.
I’ve never seen a better description of how a cultural assumption can put blinders on the eyes of well schooled professionals. And as many of us know, it precisely describes why and how so many clinicians and policy people fail to see the potential contributions of engaged, empowered e-patients: to them, the idea of a patient bringing value to medicine is ludicrous.
Here’s the epigraph at the start of the preface:
The time has come for a major conceptual shift…
From viewing lay people as consumers of health care
to seeing them as they really are: its primary providers.
—Lowell Levin & Ellen Idler,
The Hidden Healthcare System:
Mediating Structures and Medicine (1981)
1981! “The time has come” – in 1981!
Please do go download the White Paper, and read the whole preface – it’s only 900 words. For now I’ll paste in this, part of Tom’s ending statement:
My role in this project has been much like that of a host at a dinner party, inviting a remarkable cast of characters to share their insights and describe their visions. I have listened carefully and have asked innumerable questions. I’ve done my best to synthesize what I have heard, and what I myself discovered, into an intelligible conclusion:
The old Industrial Age paradigm, in which health professionals were viewed as the exclusive source of medical knowledge and wisdom, is gradually giving way to a new Information Age worldview in which patients, family caregivers, and the systems and networks they create are increasingly seen as important healthcare resources. But the emerging world of the e-patient cannot be fully understood and appreciated in the context of pre-Internet medical constructs. (Emphasis added)
The medical worldview of the 20th century did not recognize the legitimacy of lay medical competence and autonomy. Thus its metrics, research methods, and cultural vocabulary are poorly suited to studying this emerging field. … (continues)
What do you see?
When you read this, what do you see? What part of the vision has unfolded in this decade? What has not yet? If we did a second edition looking to the coming decade, how would it change?
Next in the series: Remembering Tom’s death 10 years ago today: #DocTom10, post 4
As an “e-parent,” I see current clinical practice — even at the best centers in the country — as a clear example of Kuhn’s “normal science.”
In encounters with physicians, my concerns and observations (or even those from nursing) that don’t fit the physician’s current beliefs around my son’s case are “ignored, denied, or explained away.” When reality inevitably turns up irrefutable anomalies, the tendency is to try to shoehorn them into the current paradigm’s familiar explanations and approach them with standard protocols.
I think there’s an important task around building “disruptive science” into clinical practice. Uncertainty in each patient’s case would be respected, not hidden, with anomalies in current thinking leveraged to learn more.
Current best knowledge in a field should ideally be a starting point for care decisions, but today it constrains the available options.
Patients/families are in a great position to see anomalies without the filter of a professional’s paradigm.
My observation is that the routines to use this perspective do not exist, even where everyone wants to achieve co-production. Rather, current training and daily routines reinforce the “normal science.”
To me the next step is to test new routines that begin to introduce “disruptive science” into everyday practice.
First, thanks for reading this and reading the chapter!
> Current best knowledge in a field should ideally be a starting point
> for care decisions, but today it constrains the available options.
This is so great! You’re bringing wisdom from other industries into medicine. And your point is spot-on: our goal is always to answer “What’s the best thing to try next?” which in turn begs the question of “How sure are we?”
“But the emerging world of the e-patient cannot be fully understood and appreciated in the context of pre-Internet medical constructs.”
This is a kind of philosophical issue I am very interested in. I am a designer located in healthcare design and I have recently researched the design of medical devices beginning from around 1700 until now.
I acknowledged a significant shift in use, means a shift from use of devices only by professional users towards the use by patients. This is for me by the way an obvious sign that there is a paradigm shift simmering to recognize patients as partners. Still takes time.
In my opinion we need to design new devices and structures to experiment with, to reposition ourselves and our roles, as patients as well as pro´s, in society to see how things are working and to evolve our ideas and concepts, make it feasible.
Medical devices! Fascinating – could you say more?
If a patient uses a passive device (e.g. a Fitbit step tracker) does that really make them a partner? Seems to me they’re only wearing a sensor. In contrast to that, people like Hugo Campos or Dana M. Lewis (very actively involved in interpreting their device data, and acting on it autonomously) are truly clinical partners, or even more – sometimes they’ve became aware and enabled to act without clinicians. (And maybe let them know, later.)
What do you think? I really want to pursue this – it’s a “next unfolding” of Doc Tom’s vision.
One year ago I started my PhD in Design Research, and my topic is “Designing Democratization”. The work is located in the Healthcare or Medical Design field. So the first thing I did, because I have an Industrial Design background, is the research about medical device design. I can elaborate this further if you are interested in…
Medical Devices have a strong impact on the diagnose process of patients so I wanted to find out if there are any patterns between the intended user, the location of use and the design of such devices.
What you mentioned in your post is actually what I also find out about the measuring devices and trackers on the market. These devices allow you to track your own body and produce your own data, but in most cases they leave you alone in terms of interpretation or so what? questions.
Furthermore, these devices are mainly developed in design teams, cooperating with professional users. So they do not take into account the knowledge or needs of patients. It would be interesting to experiment with this. How would a medical device or service look like, if patients had a voice in the design process?
To interpret results without doctors is quite radical, but I think algorithms are very good in doing those tasks, so why not?
It’s a good question. I know some people are most definitely involving users (patients) in design. I’ll ask on Twitter.
Okay, I tweeted it. Meanwhile, have you discovered the VERY design-oriented approach of Stanford Medicine X, the most patient-centered conference in the world? They have published their vision and design principles. Here are photos in two tweets: https://twitter.com/helenbevan/status/660801485362589696 and https://twitter.com/helenbevan/status/660795316510265344