When someone is diagnosed with cancer, their life can take many different directions. Developed by Macmillan Cancer Support and partners, Routes from Diagnosis is a project which uses patient data to look at what happens to someone after receiving a cancer diagnosis. This can help improve NHS services, promoting tailored treatment for cancer patients and a more efficient use of resources.

Why was this work needed?

An estimated 2.5 million people in the UK are living with and beyond cancer, many of whom need support after treatment to meet their ongoing needs or who live with cancer as a long-term illness. Increasing rates of cancer, an ageing population and improved survival rates all mean that this number is likely to almost double to four million people over the next 20 years. This requires a shift in the way that we think about survival and life after cancer. Using crude measures, like one and five-year survival rates, is no longer good enough to truly understand the wide-ranging impact of cancer.

What happened?

Routes from Diagnosis (RfD) is a programme of research analysing almost 85,000 cancer patients’ interactions with the NHS in England over seven years. This was the most detailed investigation undertaken into what happens after someone has been diagnosed with cancer, combining a large amount of data with insight from healthcare professionals to produce meaningful outputs. This research revealed significant differences in the outcomes, survival and cost of care both within and between types of cancer. It also provides an understanding of just how many people affected by cancer are living with serious long-term conditions.

What were the benefits?

A better understanding of what happens to people after a cancer diagnosis can be used by clinical teams and those who manage NHS services, to tailor and improve cancer care. At this time, RfD has contributed to major projects by the North Trent Cancer Network and in the City of Manchester.

The North Trent Cancer Network used Routes from Diagnosis to categorise colorectal cancer patients into different groups, enabling them to receive tailored care programmes following their cancer diagnosis. This involved patients and doctors working together to establish the types of care and support that these groups of patients need. In addition to improving a patient’s experience of cancer, this also has the potential to increase efficiency, resulting in cost savings.

In the City of Manchester, Macmillan used RfD data and additional local data to look at breast and lung cancer. This work has identified areas for service redesign, to improve outcomes and cancer care services in the City of Manchester. As an example, it highlighted key differences in how well people do after cancer depending on their age, as well as the impact of other demographical variations such as deprivation.

What type of data was involved?

The original Routes from Diagnosis uses Inpatient Hospital Episode Statistics data and Cancer Registry data. Outpatient and A&E data were not available for the first phase of the project, but were planned to be included at a later stage.

In the City of Manchester, in addition to HES and registry data, data from local hospitals was included, specifically in the form of Outpatient and A&E activity.

Monitor Deloitte had access to the data in their role as analysts. To access the data, they had to obtain permissions from various national bodies, namely the Health and Social Care Information Centre (HSCIC) (now NHS Digital), NCIN (National Cancer Intelligence Network) and the Office for National Statistics (via HSCIC).

For the core analysis, the NCIN linked inpatient HES data with cancer registry data from the NCDR (National Cancer Data Repository) and provided this to Monitor Deloitte under these permissions. This linkage was done using a standard approach and all individual records were de-personalised (information that could directly identify an individual was removed) using standard procedures (through allocation of a ‘unique patient identifier’).

There were extra information governance agreements in place in Manchester and patient data was de-personalised before being shared by the hospitals involved.

Who funded and collaborated on this work?

This work was produced by Macmillan Cancer Support in partnership with Monitor Deloitte and the former NCIN (now NCRAS).

Where can I go for more information?

Routes from Diagnosis