No idea why but breast cancer charities struggle with screening and informed choice.

I’m training my beady eye on breast cancer charities, picking over their joint response to last week’s outcome of the breast screening review. A bit of context: I refused breast screening last year, based on the inadequate information on risks that was available to me. Now I am better informed via the Review I’ll probably continue unscreened as, for me, the benefit isn’t big enough to risk the risks.

I am cross that no breast cancer charity has taken  informed choice rather than screening as their ambition for women, encouraging discussion of risks as well as benefits of breast screening. The constant chant of ‘lives saved’, ‘lives saved’, ‘lives saved’ in my ear has drowned out all other issues in their ears, too.

Am I the only middle aged woman in the UK who now thinks breast cancer charities are pretty poor advocates for women who do not have breast cancer but have diligently engaged with charities’ awareness raising?

Breast Cancer Care have been good on informed choice in the past but Breakthrough Breast Cancer’s media noodlings show it may never even have heard of informed choices by women. Breast Cancer Campaign also seem reasonable, if a bit distant. They all came together though, to make a joint statement on breast screening and the review.

Here’s a little bit of study, prior to my take on the particulars. 

I have been reading about ‘availability bias’. I’ve never come across it before this week, but it’s a psychological phenomenon that means the direction of a choice is influenced by how easy or engaging it is to imagine that a particular outcome will actually happen. This is an excusable short cut in thinking, but it does have the effect of minimising any less easily imagined other option. Think Lottery winners. We can easily visualise one winner, but not the other millions of losers. Naturally, the Lottery companies use the winners in their PR and we can then imagine even more clearly being a winner, but not the far more likely state we will achieve, as one of the however many millions who lose and will always do so. So we buy a ticket and check the numbers.

Apparently, knowledge of availability bias is used in the business world to convert prospects into customers. Marketeers are advised, where possible, to use vivid imagery and stories to communicate their ‘offering’.

Got that?

Now please read the charities’ joint response.  I’ve been to Breakthrough Breast Cancer’s site to find their versionBreast Cancer Campaign and Breast Cancer Care have the same. It’s pretty iffy. Did Breakthrough volunteer to draft it?

And now let’s revise the terms of reference for the review. I quote directly from Appendix One of the report. “The overall aim of the review is to develop an up-to-date (2012) assessment of both the benefits and harms associated with population breast screening programmes.”

So why did Breakthrough Breast Cancer headline their page with “An independent panel of experts has concluded that breast screening saves around 1,300 lives in the UK each year”. Half the story and the half they, quite predictably, would lead on.

Now read that again, thinking how you’d overcome availability bias. You’d ask about risk. The Review addressed it. But you’d never guess; no balance in the headlines from Breakthrough but they managed it in a less easy to find webpage. How about Breast Cancer Campaign pages? They present a fuller discussion, which is good, but they still went ahead and signed the screen favourable joint statement. And finally Breast Cancer Care – nuanced, and concerned about over-diagnosis on their website. Good. Why, then, did they get involved in the sketchy joint statement?  

More in the joint statement: The charities mention “concerns have recently been raised about over diagnosis”. Well, it’s not a recent idea, not recent at all. Petr Skrabanek brought it up in the BMJ in 1988 [volume 297 15 October page 971] when the breast screening regime was being rolled out for the first time. And I bet there are earlier versions, if I looked.

So where have the breast cancer charities been, in getting women like me informed about screening risks  - theoretical, or quantified, it hardly matters - from over diagnosis? Who decided women would do just fine, in the uncomplicated dark?

Next: “This independent review has provided much needed clarity – screening can save lives. This is good news for women as they can now be assured that breast screening can be beneficial”

The independent review was looking at two things – benefits and risks. Mention risks! Don’t fling benefit and 'clarity' on women’s lives saved at me, yet again. The charities are answering a question a lot of women weren’t asking. I think most women are clear that lives are saved by screening (though I am aware some public health experts certainly weren’t/aren’t) but I do think women were oblivious to the idea that harm comes from screening too. Breast cancer charities are part of that cloud of unknowing and will still be, with their repeated encouragement towards screening.

Of the three charities only Breast Cancer Care makes the problems with downsides clear. They say that “no individual woman (or their doctor) can know if a breast cancer found at screening was over diagnosed (so would have remained undetected throughout her lifetime). Nor, if she survives breast cancer, will she know whether it was because of screening.”

Back to the joint statement.

The emotional pointer ‘good news’ is attached to the comment on the benefit of screening. There is no similar pointer to emotion on the risk statement. It’s reported, sure, but it’s not labelled ‘bad news’. By retreating to fact  when acknowledging risk, but spinning benefit as ‘good news’, the charities manipulate women towards it; availability bias in action.

The statement ends with “We encourage all women to attend their screening appointments”. This simply does not fit with the push towards informed choice.  which the charities will soon claim to support. Of the three charities, only Breast Cancer Care looks as if it could easily realign itself towards balanced discussion for informed choice, rather than directing women to take a short cut past thinking, and do as they are advised.

I want guidance on how to think about breast screening, not what to think. I don’t speak for anyone except me, but I feel I can stick my neck out here - some other women will think the same thing.  

Breast Cancer Care could do it. They might like to take a stab at developing a risk-sensitive decision tree, with a bit of flexibility to accommodate the influence of attitudes, as well information needs. Someone must know how. There could be an App for that.

Comments

Screening is the greatest threat to our health and happiness

I think many of these cancer charities are either tied up with screening authorities, rely on funds from the Govt or have those with a vested or political interest in screening sitting on their Boards. We also, have the survivor groups, lots of emotion, but light on facts.
It means many/some women won't get through the misinformation and bias. We see the same issues with cervical screening, we're just expected to screen like mere bodies and after decades there is still no real information released to women and zero respect for informed consent. I think it's important to look behind the "advice" and often you'll find vested interest.
It's a mess and a health disaster for women, there is no doubt in my mind women's healthcare is the poorer thanks to these programs.
I don't take part in either program.

I agree, but only in part

Hello.

The vested interest is, I believe, largely contained in the bottom line of the income column of cancer charites where screening can be made key to the 'Calls to Action' for their cause. I don't think we need to look wider.

In the UK there is NO link between the screening authorities - tax payer funded and evidence based - and cancer charities, beyond the fact that some cancer charities sometimes agree with some of what the NHS screening system does. They will talk to each other, but that seems quite normal, mostly when there is disagreement, so the 'tie up' idea doesn't really wash here.

You may suspect there is a hidden link of course, but what's your evidence? The screening authorities don't NEED the charities to be 'on side' though it helps when they are, so I can't work out what the 'tie up' would be.

I do agree that because of the emotion of survivor groups and their flakey approach to facts, many of them are very keen on pushing screening for many cancers, not grasping the pitfalls and uncertainties of screening. Or, even, that there are any. Or that it is informed consent they should be pushing, not 'yes to screening'. Some charity activists for PSA 'screening' for prostate cancer persist in believing it's sexism that means women get access to breast screening and men don't get the PSA test in a similar 'call and recall' programme. They have NO idea that screening isn't straight forward so God only knows what terrible effects their activism has had on the men they talk to. If there is sexism in delivery of the breast screening programme it's AGAINST women, who seem to be considered incapable of grasping information on the uncertainties of breast screening and as a consequence they haven't had their 'pretty little heads' bothered with it, up 'til now!

Our National Screening Committee is under the cosh all the time from campaigners, about the cancers for which they do not yet recommend screening. You and I are rightly appalled by these arguments, since screening has known downsides and we don't get told about them accurately or often enough. Luckily, the screening committee doesn't engage with them, but assesses the evidence instead.

Your supposition that cancer charities get funds from Government has to be challenged. Government funds will rarely, if ever, feature in any cancer charity accounts - certainly never to the extent the charities RELY on government funds. In England and Wales all the accounts of all charities are independently audited and are available to the public on the Charity Commission website, and equivalent in Scotland.

There is no reason for the government to fund cancer charities. So they don't, except for the odd project or initiative because the charity compiled a good argument for it, not because the government randomly flung money in their direction for whatever they fancied doing with it. There's plenty of other places to lob their tax income. Especially now.