Sceptical about…. Cancer Awareness Months
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Cancer awareness is a package of concepts gathered up and dumped in one place, out of which we are left to pick the bones. Like Victorian fossil hunters trying to reconstruct dinosaurs we can build some pretty eccentric results with the bones we find because cancer awareness is delivered disassembled, with bits missing and no list of components.
Cancer Awareness Months (CAMs) are now a regular feature of public life and these Months have a long and stable relationship with muddle. CAMs raise awareness of [insert your choice] cancer - a nebulous concept that brings in money to charities and their business partners and offers health promotion to anyone who happens to notice.
1. CAMs aid donor recruitment, fundraising and profile raising for the activities of cancer charities such as research, support, information and campaigning. And staff (raising money).
2. CAMs help people recognise their personal risk and reduce it if they can through lifestyle changes, and be sensitive to any personal risks related to age, gender, family history or ethnicity, which can’t be changed (health promotion).
3. CAMs help people recognise symptoms and visit their GP promptly (health promotion).
4. CAMs direct people already diagnosed to sources of help (support and information).
5. CAMs highlight to politicians the lack of [insert inequality of choice – research, specialist nurses, drugs, surgery, care, access etc.] in the UK (campaigning).
After that list it’s not surprising that cancer awareness is really a masterclass in mess. The audience for a CAM is people with that cancer, people without that cancer but who might get it, people who might donate money and people who have donated money, companies who might sponsor something, companies who have sponsored something. CAMs also provide activities that are validating and affirming for the family and friends of someone with that cancer. Then there’s an opportunity for community activism, some positive PR for some random celeb or even more weirdly, just shopping.
What does ‘raise awareness of cancer’ mean? It’s certainly important to lots of people who do it. In the Charity Commission website database there are 22 charities with the words ‘cancer’ and ‘awareness’ in their activities in England and Wales. Lay understanding of cancer used to be that it was a random uncontrollable event, directed by fate. That’s probably still true now I’ve typed it and re-read it, but we’re perhaps more nuanced than previously. Now it’s known that up to half of all cancers are behaviour related, popular awareness may have shifted, albeit in muddle headed fashion, to them.
Basic cancer awareness is health promotion to help you reduce your risk, recognise symptoms and act. We’re still frightened of the random uncontrollable event cancers but can't confidently tell the difference between them and the ones that might be altered by behaviour change. At least those ones allow a 'call to action' in CAM speak. 'Do more of this and less of that' is a useful CAM message. The first problems of muddle are creeping in here though.
Why raise awareness of cancers that you can’t reduce your risk of getting?
The point is, of course, that by fundraising for research into prevention, detection tests and treatments there will be things that will come along in the future. So there is a place for raising awareness of cancers not amenable to behaviour change, it’s just a different type of content from awareness raising in other cancers that is required. The end result is muddling for the public though - people aren’t sure which cancers they can alter their risk of getting, or how. The truth is you might in some, but it won't be prevention even then, just risk reduction and you can't at all in others. It’s not that the message on cancers keeps changing, though the public are forgiven if they think it is – on, o look, a monthly basis….
Awareness is now a whole load of other things too.
Health promotion has been joined by less informative and more directing exhortations to 'go for screening' or 'get checked out with this test'. I’m not sure the public really understands how few cancers have a matching and effective screening test. Or, indeed, how complex the issues surrounding effective screening tests for cancer actually are. If the interest in shoving yourself into a CT scanner in Harley Street is anything to go by, the wealthy and usually well informed middle classes are willing to hurtle up the garden path and take a flying leap into the ordure of unnecessary investigation and treatment at the end, sure it is still the bed of roses they thought they saw from the gate.
Then there’s all the stuff about screening which seems to assume that screening prevents cancers. It can, but it depends on the cancer. Not all screenings and not all cancers are born equal but as no one discusses a range of cancers, or screen tests, especially not in a one-cancer-at-a-time awareness month, you aren’t ever going to learn that. Cancer awareness raising in some cancers doesn’t always notice that the more screening gets done (prostate cancer activists please note) more cases of cancer are identified – which is the point of screening people who are well. Quoting an increasing incidence as the reason for getting screened is circular.
Next in the pile marked ‘awareness’ comes the huge rickety edifice of charity fundraising, where the cancer becomes a cause and a charity becomes a device for tackling it. ‘Awareness’ can be expressed through sale or purchase of stuff (various), running miles and marathons, sponsorship deals, charity brand profiling and celebrity endorsement.
No health information need be part of the transaction in a Cancer Awareness Month.
Take a moment to think how you may have supported a Cancer Awareness Month. Did you learn something or pass on some useful information to someone else? Did you support research – and understand what kind of research it was likely to be? Did you donate to a charity to provide support and information to someone already diagnosed?
No? That’s weird, isn't it?
Then there’s cancer awareness that encourages donations to cancer research. Good. Great, even. But some of that is based on some wobbly conventions that put research and clinical scientists’ teeth on edge - popular clichés that don’t always bare close examination like ‘the cure for cancer’ and ‘given the all clear’.
Who ‘owns’ cancer awareness? Some owners are charities. Some are public health experts. Some are ‘survivors’. The months were created by charities, and vary between those tightly targeted by geography or media, with evaluation running alongside it, to the wildly overambitious and underfunded splurge into the public domain by media innocents assuming that 'because it's for charity' someone will think kindly of it.
Public health experts' engagement with cancer awareness is largely fact based - symptoms and risks, basically - delivered to targetted groups in localised specialised projects or services. They may get involved in awareness months but on their own terms, in their own way. 'Survivors' are the most problematic drivers of awareness – least able or willing to cast their experience in a wider context or to present balanced information to aid decision making as a professional should (not that they always do). I don’t mean survivors don’t, or can’t do 'balance'. I mean they are ‘less likely to’.
They are prone to uttering phrases like ‘Well, if it saves just one life it’s all worthwhile’ but I’d want my public health experts to take the lead on that kind of thing. No one expects a cancer survivor to be objective. I want my public health advice from someone who is, though. Survivors experiences are hugely valuable but their epistemologically privileged vantage point isn’t that informative to the rest of us who dont' have their cancer and may never get it. It's certainly affecting, but whether it is effective is moot. We may not get their cancer but are obliged to fall in step beside them and value it to the same degree and same way they do. I respect their experience but I haven't got enough emotional puff appropriate to every person's story for every CAM that comes along.
Survivors are not usually selected for their representativeness either. Their appeal is often based on extremes – youth being a common one. Fat lot of good that is in accurately raising cancer awareness. Older voices and faces are rarely used to attract attention in CAMs. This has been so misleading in the case of breast cancer that older women, who are at greatest risk because of their age, believe that it's younger women who are at risk. That's a terrible terrible failure of cancer awareness and its current framing as a consumer fest - made more regretable because breast cancer awareness has created the most highly recognised profile of all the cancers.
CAMs are a ropey form of communication about cancer. Far too many conflicts of interest and using health promotion as a Trojan horse for fundraising bothers me a great deal. Both are important. Both are legitmate. Both need more separation from each other.
No one is ‘unaware’ of cancer. Everyone has heard of it. According to a bonkers Cancer Research UK survey of 4000 people in 2007 it comes out top of the shocks.
Which of the following do you fear most?
Cancer 26%
Alzheimer’s 18%
Heart attack 11%
Terrorism 8%
Car accidents 7%
Murder 7%
Motor neurone disease 5%
Plane crashes 4%
I’m not sure if the UK population’s neuroticism is a useful thing to measure. If ‘fear most’ is equivalent to ‘likelihood’ many people wisely ‘fear’ cancer over the others, so what’s the beef? You are more likely to survive a cancer diagnosis than an air crash, so are the 96% who don't fear air crashes daft? I'm not sure what this poll really measures. It's a bit of nonsense done up to look like real data. It is typical however of Poll results used as a hook to launch CAMs. They give us the idea that these polls count for something more than sound bites, which they don't, generally.
I believe muddle is fomented by single issue Cancer Awareness Months. Almost all of them take care not to present their cancer in relation to other cancers or other major health concerns like heart disease that, more often than not, should interest exactly the same target audience.
This means that informing the public about cancer in a full, open, honest and balanced way is beyond CAM capabilities. I am certain no cancer charity is cynically excluding a sense of proportion from their awareness raising but health promotion should be relativeist not absolutist. CAMs are really for fundraising, for activists, for campaigning and for increasing charity profile, not for the cancer unaware general public. Go on. Just admit it.
Charities should be much more honest with themselves, and us, on what they think Cancer Awareness Months are really about. Are they primarily a service to the public or primarily a service to the charities?
