As I prepare for the first ‘Get Comfortable with Cancer’ workshop, I’m aware of a huge bubble of potential. The day already exists In my imagination and there’s a lot of work to do to translate that vision and excitement into the uplifting and inspiring day I want it to be. As well as making your more comfortable, I’d like to think that you will end the day with more confidence, and with more knowledge.
That ‘knowledge’ word brings a challenge because our knowledge of cancer is not complete.
How can we help people when we don’t have all the answers?
When experts in different fields don’t agree?
When people at the sharp end of the care spectrum are years out of date with people at the sharp end of the research spectrum? (See my previous post.)
What knowledge do we need to make a difference?
I think it will help to look at what knowledge is. I’m concerned that in recent years our definition has become far too narrow. I was lunching with a friend recently, sharing a success story about one of my clients and musing about what that might mean for other people.
She reminded me, somewhat unnecessarily, that ‘the plural of anecdote is not data’.
But the singular of randomised controlled trial ‘data’ is not fact.
When we think about knowledge we need to include context. The knowledge that helps us make health policy decisions for populations – the sort that comes from clinical trials – is not necessarily the same knowledge we would use to make decisions for ourselves. If that were the case you wouldn’t read worrying stories about oncologists refusing chemotherapy.
In the ‘real world’ – outside academia – there are different ways of attaining knowledge, or ways of knowing (as the knowledge scientists would say).
Here are some:
- Clinical trials
- Epidemiological studies
- Statistical analysis & extrapolation
- Consulting an expert
- Reading a book
- Old wives’ tales
- Oral tradition
- Predictions based on family history
- Asking a friend
- Self knowledge/personal preference
- Intuition/inner voices
I’ve listed them (arguably) in descending order of reliability from a scientific perspective.
But if you rearrange them in the order you’d use to make a personal decision, it’s pretty certain you’d shuffle them.
And rightly so.
There is wisdom at both ends of the spectrum.
If you were an expert charged with making a decision with the best probability of being right for a given individual in a population you would draw from carefully chosen sources high up the list. If you are an individual (even an individual doctor) making a decision for yourself, you will be inclined to factor in more of the resources lower down. If you don’t, your decision will not sit well in your mind, leading to dissonance and stress.
My point is that knowledge is both subjective and objective. To make good decisions for yourself you look at the facts, consult an expert or two, maybe read a couple of books AND THEN decide what feels right for you. Being guided solely by the outcomes of huge clinical trials is not – and never will be – the best way to make individual wellness decisions.
I hope that, one day, our health services will be able to carry out a few tests on your cells and match the treatment to the disease with a guaranteed success rate but – until they do – we need to draw on all our resources, everything we ‘know’, even some of the things we don’t, to help our bodies to heal.
How will you know how to do that?
My workshop is a good place to start.
There are still two places left on Wednesday, February 18th. If you’d like to bags one of them, please contact me below:
Carper’s fundamental ways of knowing:
Ways of knowing:
Reporting bias in medical research:
Ben Goldacre on how evidence can be distorted:
Why science is important: