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that don’t conform to the accepted tenets of the dominant paradigm are typically ignored, denied, or explained away, an outdated paradigm can insulate a professional community from new developments that are “off the radar screen” of their customary ways of thinking.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