Routes from diagnosis

These two landmark pieces of analysis use cancer data to understand variations in the health outcomes and experiences of people with cancer in England and Scotland.

English Routes from Diagnosis

What is Routes from Diagnosis?

Routes from Diagnosis is a retrospective analysis of almost 85,000 cancer patients’ interactions with NHS England over seven years. It’s the richest picture yet of people living with cancer in England. It combines two data sets with clinical insight to map the journeys people with cancer followed and the health outcomes they experienced.

Turning information about interactions with the healthcare system into usable intelligence involved a landmark linking of two existing data sets – the National Cancer Data Repository (NCDR) and Inpatient Hospital Episode Statistics (HES). Routes from Diagnosis shows that, with the technology and data already available to the NHS, it is possible to understand cancer journeys in an unprecedented level of detail.

Key findings

  • Surviving cancer doesn’t necessarily mean living well
    We know many people survive breast and prostate cancers. But Routes from Diagnosis reveals that while 70% of breast cancer patients survive their cancer, only 1 in 5 survived for at least seven years in good health (with no recurrence, other cancers or other conditions).
  • Multiple health conditions are the norm, not the exception
    The analysis reveals that 2 in 3 people with cancer are admitted to hospital for conditions other than their cancer.
  • There is huge variation in health outcomes between cancer types, and in people with the same cancer type
    To put it simply, 'one size does not fit all'. This knowledge informed Macmillan’s testing of ‘stratified care pathways’, in which people receive personalised care after cancer treatment according to their individual needs.
  • The best outcomes do not necessarily cost more
    Routes from Diagnosis suggests improving outcomes for patients could save the system money. The analysis reveals how the rate of cancer diagnoses affects the healthcare system – for example, the length of time patients spent in hospital, when they accessed a service, and the cost. The highest costs were not associated with long-term survival, but with people who survived in the medium term, experienced complications or secondary cancers, and needed more care after treatment.

Download the Routes from Diagnosis report [PDF]


Scottish Routes from Diagnosis

What is Scottish Routes from Diagnosis?

In Scotland, there are huge variations in patient pathways and needs following a cancer diagnosis. Scottish Routes from Diagnosis uses data shared by patients and collected by the NHS to better understand these variations.

In partnership with Information Services Division (ISD) of NHS National Services Scotland, we linked and analysed data on the experiences of over 31,000 people in Scotland diagnosed with breast, colorectal, lung or prostate cancer in 2007 and in 2012. We then developed ‘Survivorship Outcome Groups’ (OGs) – robust definitions of health outcomes that can apply across and within cancer types. The findings will be used to inform service development, helping the healthcare system adapt to the reality of living with cancer in Scotland today.

Key findings

  • More people are surviving their cancer than ever before, with some recovering to a state of health that was very similar to pre-diagnosis. But others have ongoing needs stemming from the effects of cancer and its treatment. Most notably, more people are experiencing cancer as a long-term condition.
  • Five years after diagnosis, more than a third of people (36%) had experienced a new diagnosis of cancer, or were living with cancer that had never been cured or had spread.
  • There is huge variation in health outcomes between cancer types, and in people with the same cancer type:
    • In people with breast, prostate or colorectal cancer, five years after diagnosis almost 40% had experienced a new diagnosis of cancer, or were living with cancer that had never been cured or had spread. This is compared to just 27% of lung cancer patients.
    • Around two thirds (65%) of people diagnosed with lung cancer died within a year, compared to only 6% of breast cancer patients, 8% of prostate cancer patients and 27% of colorectal cancer patients.

Read the report:

You can also explore the data through ISD’s interactive tool.