A post that looks like a treatise; informed choice about cancer screening. Lots to say!

I recently sent in my response to the consultation on informed choice, information and NHS cancer screening programmes. Here is the nubbins.

  • The explanation of benefits and harms  - an informed choice – is absolutely the right driver for information provision on cancer screening.
  • The consultation focuses on getting the content right for as many individuals as possible. This is good, as far as it goes, but it does mean that they have lost sight of the audience for the information as populations and how best to deliver the information.
  • And then I have a puzzle - as cancer screening programmes are population based and informed choices are individual, won’t exercising an informed choice instantly modify the supposed effectiveness of population based programmes? Should estimates of the programmes’ effectiveness be reviewed, to compensate? Is ‘NNS’ (Numbers Needed to Screen) any use for communication, like NNT?

The consultation has a lot of the right content but in the wrong order, with the wrong emphasis. Their’s is a simple content focussed consideration of the task 1)to promote informed choice, 2)about cancer screening, by 3) people.

It needs more steps, in a different order. Start by thinking about 1) men and women, not people. Introduce 2) screening via 3) health and then 4) cancer, then help men and women towards 5) informed choices.

There are two constituencies for cancer screening - men and women. They demonstrate differences in their preferences for the way that health information is presented. The proposed approach lacks gender sensitivity. This would enhance both the delivery and the look of the proposed information.

Cancer screening information, rightly, won’t have a stance on which cancers may be worse, or more, or less worth considering. The readership will not be similarly neutral. Women may engage with breast and cervical screening and men may think about prostate cancer, [confusingly for them, but logically for the NHS, not part of the programme] but neither would think much about bowel screening. Gendered explanation of bowel screening to each constituency, as a men’s, and a women’s issue is needed. Gender specific cancers have settled in the public’s mind as the only cancers to consider. This must be acknowledged and addressed in the styling of the written materials.

The outcome of a gender specific approach to cancer screening for women would be ONE screening information programme on

  • Cervical
  • Breast and
  • Bowel cancers

Gender sensitivity towards men prompts a radically different suggestion.

Men have less experience of screening than women. Bundle up men’s screening issues into elements of ONE clearly related schema for men. This may add value to each part of this complex area.  

Triple A screening is to be introduced for men. I know this is not cancer. However, men are just as dead after a ruptured abdominal aortic aneurysm as when death arises from a unscreened bowel cancer. Now there is population screening of adults for a potentially lethal ‘non cancer’ condition, there is no imperative to keep cancer as the defining category. If there was a proper user focus on men, Triple A would be included in this project. The screening choice men make on Triple A has all the usual screening concepts, the same ethical drive to informed choice and many of the same target population of men as the bowel programme has.

Approaching the same men with bowel cancer screening and AAA totally separately is irrelevant turf-wars silo-thinking.

Prostate cancer also affects men; it is also a screening issue. The Prostate Cancer Risk Management Programme (PCRMP) would sit well here, within the informed choice project. Having invented the PCRMP, the NHS is stuck with it. As the new model is informed choice and not driving people to screening, you can include communication on the PCRMP appropriately, even though you will not be inviting men to have a PSA test. No matter how often any public health expert points out PSA tests are woeful screening tests (they are) they will always be screening tests in the lay view. Work with that. You do not have to agree PSA tests are unambiguously safe, or effective, to do so. You might even find this new context makes it easier to say PSA tests aren't, and why, more consistently to more men. 

So, in parallel to the women’s programme then, there would be health screening information to facilitate informed choice for men. It is not called a cancer screening programme. It consists of

  • Bowel cancer
  • the PCRMP and
  • Triple A

Cancer charities are mentioned. They represent only a small subset of people exposed to screening; the subset who land up with a diagnosis. People with a cancer diagnosis are far more likely to see the advantage of screening and engage much less with the concept of risk. Cancer charities can't help but miss the much larger and main user group of concern – the men and women who make screening decisions. In almost every case these are not going to be people with cancer, nor be in any contact with a cancer charity.

Cancer charities use screening as a key message and a ‘Call to Action’. They may not have spotted it or, if they have, they seem untroubled by the ambiguity, but cancer charities are the main drivers to overdiagnosis. They only know about the ‘positive’ results from screening. They cannot tell who the ‘overdiagnosed’ are. To them, overdiagnosis is a theory, not a threat. They have no experience of the negative effects of screening. They know nothing at all about the repeatedly screened men and women who never get a diagnosis but who make a screening decision every time a letter comes.

The proposed approach marks a general raising of the bar in the standard of information, but not to the same degree across all populations. It will suit people like me very well- the middle class, educated stereotype with an impeccable healthy lifestyle, active health awareness and well able to negotiate health services and grasp evidence.

I am not clear how the new approach would work for people less able or inclined to weigh up the pros and cons of screening, at different times, for different cancers or conditions. I see there is a mismatch of my expectations, demands and approach to risk management with the capacity, inclination or chance for others to benefit.  

There may be a need for another research project defining a tool kit/set of principles/resources/ guidelines for informed choice amongst ‘hard to reach’ groups.  What do the ethicists say about promoting informed choice where cultural barriers, socio economics etc. get in the way?  It is clearly not OK to simply direct some to screening because informed choice is too complicated, whilst facilitating informed choice for people like me. There’s no option to operate a postcode eligibility for informed choice. There needs to be an impact assessment of implementing informed choice amongst populations subject to health inequalities/inequity.  

A Media and PR strategy should be devised to back up ‘informed choice’ as the way to discussing screening. It might stop some of the dimmer coverage of screening if they engage the health reporters and science media in high quality thinking, and counter accounts of screening that only cover advantage, through exhortations to attend. Yes, Embarrassing telly tubthumpers - I mean YOU. 

There needs to be more work on screening literacy for people from ethnic minorities, people from poorer socio economic backgrounds and men – who have little experience of cancer screening so far. Triple A screening needs to be integrated into the information agenda on screening for men. This will increase health literacy skills and add value to Triple A screening, bowel screening and the information already available on prostate cancer ‘screening’. 

What is the position on QOF and cancer screening? I believe the QOF and cervical screening are linked. That link counters good intentions on personal choices and decision making. The QOF could be altered to include a measure on providing information about screening, rather than relating to the numbers of people screened.

The regulatory and standards environment needs addressing. The NHS is the leading provider of screening services and now there is a great deal of effort going into making it an informed choice. This should be an aspirant and enviable gold standard. Challenge everyone to meet it. Private providers cannot continue to sidle up to people, flashing their bastard version of ‘screening’ as a privileged ‘choice’ when it is the NHS who will be the exemplar in improving the quality of choice for thousands of people.    

Work with the British Standards Institution, for example, to create a Standard for information provision on ALL/ANY screening tests available direct to the public. ‘Choice’ is the core claim of private health providers but misinformed choice is no choice at all. The private health sector sells a lot of product based on the public’s perception that screening for cancer is obviously a life saver and is obviously a risk-free choice. Harley Street offer everything all the way up to whole body CT scanning for anyone with big enough neuroses, little enough knowledge and cash to stuff in the gaps between. Their poor standards of information for informed choice should be dismantled by statutory or, more probably, regulatory powers.

The Care Quality Commission should be tasked with monitoring information given to ‘consumers’ as part of private cancer screening provision. Providers can offer screening to whoever they fancy but with all relevant information available to facilitate informed choice NOT service take up. Informed choice is a meaningful and high standard. As the CQC regulates diagnostic and screening services they should be empowered to develop a ‘standard’ of information provision that screening services must meet, based on the template in the consultation. Currently they monitor 16 essential standards in provision, of which Outcome 2 is the most relevant – consent. Could this be modified to include ‘informed choice’ in ‘well person’ screening services?  

Improved understanding of user and non-user experience of cancer screening is important. Bypass cancer charities and establishing two more groups -  NHS screening service users who are without cancer diagnoses - and NHS screening service refuseniks. There are two obvious types of refusenik. Some have never thought about screening, bogged down by acute problems in other areas of their lives, finding it hard to adopt or even recognise healthy lifestyle behaviours and have poor information seeking behaviours; the ‘hard to reach’ stereotype. By definition, they will be difficult to recruit. I'm not sure screening is the most important thing for them to tackle but I'm edgy about two tier ethics in both implementing and evaluating informed choice. Others will have thought long and hard about screening and only then did not attend. These will be less difficult to recruit.

There is no mention of NAEDI, the National Awareness and Early Detection Initiative in the consultation. What other cancer risk reduction or symptom awareness messaging can be piggybacked onto screening invitations? It seems foolish to miss the opportunity to target information to individual men and women, whilst not distracting them from screening, of course.

Finally, my observation on how to use population based evidence to finesse and support individuals’ choices. This feels impossible. Where will the evidence of effectiveness that informs choice come from, once you attempt to individualise a population derived screening programme? The public may expect a high level of individualisation but I do not believe it is possible on current knowledge, and nor will it be for the foreseeable future.

Informed choice, oddly, also feels subversive, rendering impossible the introduction of any new screening tests in the years ahead. I am struggling to see how it is possible to RCT any new cancer screening test with informed choice as an element when you cannot inform the choice as the answers are not known. If they were known, you would not be doing the RCT. So how is it possible to implement that screening programme with informed choice but based on figures derived without its effects?

My brains have just melted. Why am I not surprised?