If you were inventing cancer awareness from scratch, what would it look like?

Submitted by Chris Hiley on Tue 16 Nov 10 - 14:06
in

If ‘cancer awareness’ for health promotion was to start suddenly now, invented as the result of a bright idea from a public health specialist, I’m not sure we’d settle on our current method of informing the public about cancer as the best we could come up with. I’m not even sure that what we have even counts as a ‘method’.

GPs are probably considered ‘key’ in cancer awareness which isn’t terribly reassuring if you have my GP, who specialises in homemade A4 laminated sheets of instructions ON HOW TO ADDRESS THE RECEPTIONIST, IN FULL CAPS LOCK. She's also so overworked alternating children with old people, a nice chat about general cancer awareness with me is not part of the offer there.
 
If cancer awareness isn’t from the GP, it might be from the press and broadcast media whose performance is patchy. Most media is notoriously ill at ease with older men and women - the ones who are most at risk of cancer. There is no duty to inform, and entertainment is fun, so it’s hardly surprising media messages on cancer awareness are not complete, coherent, consistent or even, sometimes, correct.
 
The information seeking skills of a lot of people are quite ummm…eccentric though I’m sure they make complete sense to them. If you seek information on the internet you’ll get it – unfiltered - ranging from rational objective high quality sources, to any random nut’s musings. This is fine if you can sort the bonkers from the best but isn't if you think you can and you can’t, or you simply can’t, full stop.
 
So if cancer awareness needs re-inventing how would you do it? Basically you’d look at
  1. Who needs to know stuff,
  2. What stuff they need to know and
  3. The most effective way of getting that information to them.

And then add in some evalution research to see if it works or how to improve it.

You’d also have to play the odds – not insisting on communicating every single conceivable option to every single one of the 47.6 million over 18’s in the UK, in exactly the same detail just in case. Undoubtedly some 40 year old men might get prostate cancer but those numbers are in the low double figures every year so decide from the outset to spend your time trying to find the 10,000 men in their seventies who will get it.
 
The imaginary public health specialist would peruse the four home nations’ cancer figures and see what they looked like – who are the men and women who get cancer, how commonly and which ones have the highest mortality or shortest survival? Cancer has different ways of being ‘bad’ – it might be diagnosed in a lot of people and kill some, so it’s the numbers affected that is the problem but other cancers  are diagnosed in many fewer people but kill all of them quickly (e.g cancer of the pancreas, lung or oesophagus) so it’s the severity for the individual that is the issue there.
 
They’d find older people and higher rates of cancer in men. This is not what you might expect, given the dominant narrative of public cancer awareness, modelled on breast cancer which brings ‘younger people’ and ‘women’ to mind.
 
Once orientated in that data my imaginary public health specialist would look at the audience for health promotion- the as yet unaffected public. This is very important. The as yet unaffected public. Just them. Not people with cancer already, the ones with an emotional relationship with the cancer, the ones who want to tell the whole story to everyone, just in case. The as yet unaffected public need balanced, objective broad information.
 
My imaginary public health specialist would want to know how many of them there are and their demographics. Well, there’s 23.4m men in the UK and 24.2 m women. So that’s

Men                            Age            Millions

Young men                  18-45          12m

Middle-aged men          46-65          7.6m

Older men                   65+             3.7m

 

Women                    Age               Millions

Young women             18-45            11.8m

Middle-aged women     46-65           7.9m

Older women              65+              4.4m

And women need to know about lung and bowel and the rest, not just breast or uterine cancer. Ditto men need to know about more than just prostate or testicular cancer . My public health specialist would probably decide that younger men and women need more information on risk reduction than on symptom recognition. Older men and women would need the balance of information reversed - more help on symptom recognition than on risk reduction. Screening would pop up in several places and bear repetition.

Then there’s social, educational and economic influences that alter their chances to get and use any cancer awareness information. These are compounded by  preferences for format (leaflet, CD, webpage etc.) and style and the effectiveness (or not) of dissemination.
 
In this imaginary world where cancer awareness suddenly needs to be defined and the audience properly understood I don’t know what stigmas or preconceptions about cancer would already have emerged or how to counteract them if they had, but that is another aspect to the evidence base that would have to be assessed whilst constructing the messages. For instance, I wonder if men think many more women get cancer than men do, and women also think that. Good data on lay beliefs would also help understand blame and fault in cancer awareness and how much that leads to late presentation or feelings of hopelessness.
 
That’s quite a lot of ‘who’ sorted out. So what is the ‘what?’
 
The ‘what’ is the content of the messages – which will be divided into A) risks and reducing them and B) symptoms and recognising them and the action to take. The two are quite different.
 
A)   Risks are mostly related to lifestyle and lifelong characteristics that can be modified out of existence or ameliorated if change is not possible.
 
B)   Symptoms signify something rather faster going on and should be taken promptly to a GP for evaluation. They can be an early warning of a cancer. They may be nothing to do with cancer or they may appear too late in the life history of a cancer to be an early warning. But as they might be an early warning notice them and do something.
 
Risk behaviours relate to so many cancers - smoking, inactivity, obesity and alcohol intake are key, so create messages that talk about those four things. More people might respond by noticing the risk factors they have, rather than try and imagine the cancers they might get and see their risk factors from that abstraction in the future.
 
And finally some wobbly incomplete thoughts on ‘how?’
 
There’s no overarching theory here. Written and broadcast media are still important but I’m not sure how to wrangle them into shape without being fascist about it so that’s not an option. Cancer awareness information from the internet won’t change so where to start on that one quickly becomes don’t even start.
 
Something could be done with cancer charities but it would take years to uncurl their grip on cancer awareness as a vehicle for fundraising. Evidence on the effectiveness (or otherwise) of the suggested life stage rather than tumour–centric way of doing cancer awareness would really help. The ‘as yet unaffected’ public’s ‘need to knows’ won’t be details on each cancer. When there’s 200 of them when would you stop?
 
My only sure conclusion is cancer awareness should be all about the audience - the as yet unaffected public. And it isn’t, at the moment.