Cancer Screening: A Political Minefield

Karol Sikora, PhD, FRCR, FRCP, FFPM


June 04, 2019

This transcript has been edited for clarity.

Hello. My name is Professor Karol Sikora and I'm talking about cancer screening – the political consequences and dimensions of it.

This is based on a report that came out last month from Mike Richards, the old cancer tsar, an Independent Review of National Cancer Screening Programmes in England .

It came on the back of two disastrous IT failures that were revealed last year, one in cervical cancer, one in breast cancer. A lot of patients' data were lost in the system, and they never got the appointments to come for call/recall checks. Thousands of patients just disappeared from the computer database. The other weakness in the system is that it's come to light that plans for faecal immunochemical (FIT) testing, and once-only colonoscopy, planned in 2011 have never been implemented properly, with patchy uptake around the country.

And to cap it all, despite a lot of talk on artificial intelligence, which should be so helpful to this type of logistics, it's just never been implemented. So talk and no implementation. But crucially, the real problem in the programme is an actual reduction in the number of customers using it. And of course, the reduction is greater in the deprived areas and in people in lower socioeconomic classes. The reasons for this are complex and in a system that's free at the point of care, perhaps surprising. But it's the same in all countries.

Back to Basics

So how are we going to tackle this?

Back to basics, why do we do cancer screening? Well, to reduce mortality. We can reduce the stage of the cancer, downstage the cancer, so the chances of metastasis, and therefore the chances of death, are less in lower stage cancers.

It can be defined as the systematic application of a test to individuals who have not sought medical attention because of symptoms. It can be opportunistic, where you offer it to people when they come for something else, from a nurse, pharmacist, and so on. Or it can be targeted at a specific age group. Sex, obviously, depending on the disease, and you just do a call/recall system which is highly computerised.

The problem is that each test has its own sensitivity and specificity. A 100% sensitive test detects all cancer in a screened population. Very few tests do that. The specificity of a test, if it's 100% specific, there are no false positives at all. It's always right. But of course, none of the tests, least of all the relatively clumsy ones we have for breast, colorectal, and cervical cancer are 100% specific and sensitive.

Compliance Rates

The real problem is motivating the customers in the concept of screening. The compliance rate varies enormously across Britain, driven by education, socioeconomic factors, and deprivation. The 'worried well' of Windsor are likely to go for every free test on offer from the NHS, two miles down the road, the socially excluded patients in Slough won't even pitch up to the doctors until they have advanced cancer.

And yet Harley Street is full of clinics offering top of the range health screening for over £3000, with scans and so on to the gullible wealthy with really no evidence of benefit.

To save lives, we have to target the poor, and it's the same in all countries. I spent 2 years with the WHO cancer programme, and that was the main problem, it's the same all around the world.

The Richards report is carefully crafted and worth a read, presumably to avoid offense. But reading between the lines suggests very serious problems, with declining uptake and a significant lack of staff and facilities for the downstream processing of patients with abnormal results.

Like all good NHS documents, it pays lip service to being inclusive: programmes for clients with LGBT+, ethnic minorities, those with learning disability, but the actual examples are pretty low level projects with almost no evidence of benefit. And what works for everybody works for those subgroups as well. The system is just cumbersome for everybody. If you look at EasyJet, Amazon, Trainline, all these consumer-based interactions with a computer, they make it easy for you. It strikes me that in this digital age, the smartphone has to be the way forward. Everyone's got one. You go to a sink estate; they're sitting there playing with their smartphones.

My wife gets her breast screening letter every 3 years, and it's clumsily written, poorly laid out, from local staff, with just a specific time of place. That's it. No chance to book online. Sure, there's a phone number, but you try phoning it. It just rings and rings till it clicks off.

Making the whole screening process convenient, both location and timing, is important. We know also that the politics of breast cancer screening is incredible. Everyone gets an incomprehensible leaflet about managing risk, and deliberately the leaflet undermines the whole validity of the process. It's no wonder many women simply say enough's enough - let's go to the pub instead of wasting our time having a mammogram.

Cancer Screening Systems

So let's look at the report.

NHS population-based screening is for breast, cervical, and colorectal cancer with its recall/call system. The call systems come from GP lists, so if the addresses are wrong there you won't get an invitation.

The key problems in all three programmes are the same and pointed out by Mike Richards: clunky access for systems for clients, huge variations in uptake, lack of downstream processing capacity, workforce shortages at all levels, confusion in management, local community, NHS England, Public Health England. In typical NHS speak he calls it multi-layered management. Also, lack of interest in primary care, probably because there's little money to be made for a practice out of it, and the lack of short-term positive feedback. It takes years before your programme shows benefit.

The key in the report to success is good IT and that's not a feature that shines in our wonderful NHS.

Each of the three screening services has different features.

Breast Screening

Breast screening in the UK is supported by NHS Digital to provide the software to manage the call and recall of women who are eligible for screening. A private provider, Hitachi, provides the National Breast Screening System, known as NBSS, which is used to record the outcomes and to keep a complete record of a woman's history over the years.

Cervical Screening

The cervical screening system was handed to Capita in September 2015. Unfortunately, after a series of problems, they were relieved of their contract, in other words, fired, earlier this year. It's now being taken by the Primary Care Support England (PCSE), who are running the service on behalf of NHS England in-house.

The cervical programme is currently supported by NHS Digital until its replacement as part of the Primary Care Transformation Services Programme.

Bowel Cancer Screening

The cancer of the bowel, the colorectal cancer programme, is again NHS Digital, a single bowel cancer screening system for England. It maintains the whole lists of people, sends the invitation and sends out test kits for faecal occult blood, and eventually faecal immunochemical tests, records the results, and so on.

As you can imagine, it's a bureaucratic nightmare with NHS apparatchiks sitting in offices all over the country, pushing papers across tables, filling forms, going to meetings, and generally finding things to do to fill their time, 9-5.

Streamlining Systems

Because it's so disparate, these people are all over the country and are not centrally managed. Mike Richards' conclusions are not inspiring, simply because the system is so daunting. His report concludes that we need streamlined governance, increased diagnostic capacity, artificial intelligence, focus group recommendations, and then develop specific recommendations.

I know Mike well, and I think he's run out of steam here because there's very little to do that you can recommend.

This isn't his final report. That's coming next year, and we look forward to getting it. A radical overhaul is clearly the only way forward with some form of centralised IT system for the whole NHS, so that you can tap into modules for different screening programmes. We need a unified strategy, clearly, working under one roof with a decent interactive computer database.

After all, women are part of all three programmes, men are only part of the colorectal. So, collecting all the data should be really feasible.

We also need to spend some attention assessing the need for secondary trials after you have an abnormal result. We just don't have the workforce to do the colonoscopy, for example. And we need to embrace new technologies, genomic stratification of risk, circulating cancer cell DNA, whole body scanning devices. All this needs to be factored in with some line of command, some line of responsibility to ensure that like many aspects of cancer care, we don't fall further and further behind the rest of Europe.

Professor Karol Sikora here talking about cancer screening, the political dimension, and I'd love to hear your views. Thank you for listening.


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