Macmillan's Routes from Diagnosis
Routes from Diagnosis (RfD) is a programme of research which allows us to describe the clinical journeys patients follow, and use this to inform the service development and commissioning agenda.
What is it?
Macmillan’s ‘Routes from Diagnosis’ is a programme of research performing retrospective analysis of almost 85,000 cancer patients’ interactions with the NHS in England over seven years – the richest picture yet of cancer survivorship.
By linking and analysing routinely collected data, such as Cancer Registry data and Hospital Episode Statistics, it allows us to map the cancer journey from diagnosis to death or continued survival, describing the health outcomes that patients experience. This can include survival times as well as the rate and frequency of cancer, and non-cancer related 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 story of cancer is changing – by 2020, nearly half of us can expect to get cancer in our lifetime, but almost four in ten will not die from the disease. The number of people living with cancer in the UK will double from today’s two million to four million in the next twenty years. But until recently, patients’ clinical journeys after diagnosis and treatment have not been well understood.
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. This is useful because all the clinicians who see cancer patients after their treatment need to be aware of the issues cancer survivors may face.
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.
Understanding the health implications can 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 effect 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 is 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 April 2014, we published Routes from Diagnosis: The most detailed map of cancer survivorship yet [PDF, 4.16MB, opens in new window], which contains findings for breast, prostate and lung cancers and brain and central nervous system tumours.
In future, 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 Deloitte, and add additional sources of data to gain further insights into cancer survivorship
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 and Manchester
Explore how clinicians and commissioners in the NHS could use the Routes from Diagnosis findings and approach to tailor and improve cancer care
Work closely with people from Macmillan and externally to use and communicate the outputs of the programme in valuable, effective ways.
For more information about Routes from Diagnosis contact: Julie Flynn, Senior Programme Manager - Routes from Diagnosis firstname.lastname@example.org.