In 2007 my survival from a near-fatal cancer was aided by information from my patient peers – information that will never warrant getting into a peer reviewed journal. But it was real.
Next in the series of fourteen foundation truths about Superpatients.
Many of the posts in this series have been about the nature of science, both its intellectual basis and the practical realities of how it’s practiced. When you’re at the fringe of medical knowledge, by definition you are messing around in a region where things are not mainstream, and you are hoping to find something that works – something unknown or not well-known. So it’s useful to understand the nature of reality, the nature of science, the nature of medical literature, and how knowledge flows (or doesn’t flow) to the point of need. Here’s a recap of those posts:
- What science is:
- Good science is measurable, verifiable and reproducible.
- The scientific literature:
- Scientific journals have different motivations and “biological clocks” than desperate people.
- Not all published science is good science.
- Not all truth has been discovered yet. Some things are true even though science hasn’t found them yet (so they’re obviously not in a journal).
- Dissemination – getting the word out to those who need it:
- New knowledge doesn’t flow instantly to everywhere. Something can be true, might even be in a medical journal, and not yet be known by most doctors. Great reason for you to go hunting!
Today’s is the final item about this “fringe of medical knowledge”: in the scientific process of testing ideas and publishing results, not all genuine reality will make it into the literature. This too is legitimate reason for you to explore, if you wish.
Note: not all useful information is science – even potentially life-saving information – because it doesn’t meet the criteria of being measurable, verifiable, and repeatable. What worked for me may or may not work for other people, and when it does, we may or may not understand why. Until we understand that and can run repeatable experiments, it’s not science, even if it’s useful. “Useful” and “science” are two separate properties.
Case in point: in my cancer, a harsh reality was that the treatment I was undertaking – my only chance at survival, back then – might kill me with its harsh side effects. To make a long story short, the only information I found on how to prepare came from other patients. Such advice will never make it into the literature, because research is expensive and there will never be enough use for information on how to tolerate side effects of such an obscure medicine. (And the more unusual a situation is, the harder it is to get enough patients together to call it a study.)
That’s not the only reason useful info might never get published as science. My own preferences and yours – and differences between our cases, medically – may mean that what’s important or relevant to you may not be to me. And as the era of personalized medicine unfolds, focusing on your specific biology as different from mine, this will only increase.
On a related note, I suspect the exploding field of the microbiome will amplify this point further. This is superpatient Larry Smarr’s special area of expertise. See his TEDMED Talk.
The lesson is simple: you and I may each inhabit different areas on the fringes of knowledge. So the medical literature plays a valid role, but as we’ve seen, it’s neither perfect nor the sole source of truth, and may never be the place where anyone will find the truth that changes life for them.
Leave a Reply