How our understanding of 'early diagnosis' has evolved - what really matters to patients?

Back in 2000, when I first started working full time in the cancer charity sector, the government had just published the NHS Cancer Plan, focusing mainly on treatment as a means to improve outcomes.

Over subsequent years, we gained a greater understanding of the extent and impact of ‘late diagnosis’ in the UK. This was largely due to the increased routine collection and systematic analysis of cancer stage at diagnosis, which became more widespread, accurate and complete. The ‘routes’ by which people were being diagnosed with cancer also became increasingly clear, and we learned that too many were found as a result of emergency presentations and too few via screening or managed GP referral routes. By 2007, the next national cancer plan, the Cancer Reform Strategy, had a major focus on the importance of early and faster diagnosis. 

This triggered more than a decade of research and activity dedicated to diagnosing cancer earlier (and finding better ways to measure this), whether by expanding and improving screening services or through symptomatic presentation. Primary care became much more central to the issue too, given that GPs are the vital ‘gateway’ through which patients with symptoms most often pass. The 2015 Cancer Taskforce, led by Cancer Research UK, maintained the strong early diagnosis focus. All this culminated in the NHS Long Term Plan in 2019, which launched a national ambition for 75% of cancers to be diagnosed early (at stage I or II) by 2028.

A bold ambition, but with limitations

This early diagnosis target was monumental for the cancer community. More cancers were being managed through ‘Urgent Suspected Cancer’ pathways, screening programmes made further improvements and lung cancer screening for high risk populations explored, the Faster Diagnosis Standard was set up, focus given to increasing diagnostic capacity (although this struggled to keep up with demand from the growing numbers being referred) and a gradual improvement in the proportion of cancers diagnosed at stage I and II was observed. 

However the 75% target has always been a partial measure. For example, it fails to incorporate cancers that are not staged, such as blood and brain cancers and does not consider the nuance of within-stage outcome differences or heterogeneity within cancer types. Increasingly too, there are certain cancer types that can be treated much more effectively at stage III than stage IV. 

These challenges are particularly evident for rare and less common cancers. 47% of all cancers diagnosed and 55% of all deaths from cancer are for rare and less common cancers. Many of these cancer types are typically diagnosed at a late stage, and none has a screening programme, a key means for driving early diagnosis.

Thinking differently about early diagnosis

A recent project by Cancer52 , a consortium of charities that support patients with rare and less common cancers, has sought to delve more deeply into how 'early diagnosis' could be defined so that patients with all types of cancer can benefit. 

The organisation asked people with rare and less common cancers, their families and carers, and the clinicians who treat them, what early diagnosis means from their perspectives. The overwhelming response was that an early cancer diagnosis should mean finding cancer when we can make a substantial difference to patients’ lives - and this varies from person to person.

Patients stressed that an early diagnosis should enhance treatment options, ability to join clinical trials and provide time for informed decision-making, as well as moments with loved ones. Clinicians highlighted that current staging-focused definitions might lead to prioritising cancers where early detection is easier.

A new approach to measuring early diagnosis

The resulting Improving diagnosis: Patient and clinician perspectives on increasing early diagnosis in rare and less common cancers report, sponsored by GRAIL, sets out new thinking on how the NHS should approach early diagnosis. The report also provides clear policy recommendations to be considered for the next round of government cancer strategy - the 2025 NHS National Cancer Plan. 

One key recommendation is that a new early diagnosis target should be introduced that prioritises diagnosis at a point when a substantial difference can be made to a patient’s life. For some cancers this might be equivalent to stage I or II, but this will vary between cancers depending on a range of factors. Measuring this new target should not require additional data or reporting burdens for the NHS. Instead, existing measures could be updated or reframed, for example to measure the absolute reduction in the number of people diagnosed with cancer at stage IV.

The National Cancer Plan is coming at a time of considerable strain for the NHS, when radical new thinking is needed to continue driving progress. Ensuring that the NHS continues to improve early cancer diagnosis, followed promptly by appropriate treatment for all patients with every type of cancer, will be an important legacy for the new plan.