Macmillan's Routes from Diagnosis

What is it?

Routes from Diagnosis is an approach which links and analyses routinely collected data, such as Cancer Registry data and Hospital Episode Statistics. It allows us to map the cancer journey from diagnosis to death describing the health outcomes that patients experience. This can include survival times as well as the rate and frequency of cancer and non related cancer morbidities.

The approach also lets us see how the frequency and rate of cancer diagnoses is affecting the health care system, for example the length of time patients spend in hospital, when they access a health care service and how much this costs.

Why is it important?

The UK has a growing population of people affected by cancer. Whilst more people are surviving cancer, they are also living longer with cancer and we don’t know enough about the long term-implications or the needs of this population.

Side effects of cancer treatment affect quality of life; a significant proportion have ongoing health and support needs. However, many do not experience any side effects and have minimal support needs. At the moment health care systems are not set up to distinguish between these two groups or to cope with the growing cancer population.

It's really important that we understand the health implications and ensure successful planning, development and implementation of cancer services. Cancer services need to be tailored to meet the different health and support needs of people living with cancer, be effective and make economic sense.

Macmillan is beginning to learn much more about the two million people currently living with cancer. Routes from Diagnosis provides an evidence-based view of the affect of disease on the people living with cancer and on the health system. 

Who will benefit and how?

The evidence delivered by the Routes from Diagnosis programme will be useful for a number of different audiences, including cancer patients, carers, clinicians, commissioners and public health planners or policy-makers.

What are we doing next?

The Routes from Diagnosis approach started as a pilot study in three cancers: colorectal|, multiple myeloma| and Hodgkin lymphoma|. In order to turn this into something useful for us and the groups of people described above, we have developed a three to five year programme of research and implementation. The programme will:

• roll the Routes from Diagnosis approach out across other key cancers in partnership with the National Cancer Intelligence Network (NCIN) and Monitor Group
• test and implement the results of the research e.g with initiatives which aim to transform follow-up and survivorship care. Work is currently underway in Sheffield to inform the Macmillan – North Trent Cancer Network Adult Cancer Survivorship Project
• extend our knowledge of the survivorship journey by combining our current knowledge of cancer survivorship with existing projects and initiatives to add value to the Routes from Diagnosis research and
• work closely with people from Macmillan and externally to use and communicate the outputs of the programme in valuable, effective ways.