Routes to Diagnosis

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Cancer survival in England is lower than the European average, which has been at least partly attributed to later stage at diagnosis in English patients. There are substantial regional and demographic variations in cancer survival across England. The award-winning Routes to Diagnosis study defines a methodology by which the route the patient follows to the point of diagnosis can be categorised, in order to examine demographic, organisational, service and personal reasons for delayed diagnosis. Initial Routes to Diagnosis results for patients diagnosed in 2007 were presented in a data briefing published in November 2010. Since then the methodology has been reviewed and the results have been updated to include patients diagnosed from 2006 to 2016. The latest results follow the same methodology as the 2006-2008 study. A case study was published in 2016 for the Quality in Care Programme.

Administrative Hospital Episode Statistics (HES) data are combined with Cancer Waiting Times (CWT) data, data from the cancer screening programmes and cancer registration data from the National Cancer Data Repository (NCDR). Using these datasets every case of cancer registered in England which was diagnosed in 2006-2016 is categorised into one of eight ‘Routes to Diagnosis’.

The methodology is described in detail in the British Journal of Cancer article “Routes to Diagnosis for cancer - Determining the patient journey using multiple routine datasets”, which was published in October 2012.

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With the latest publication, Routes to diagnosis covers cancers diagnosed across 10 years and provides information on over 3 million common, less common and rare cancers. To coincide with this release, the information has been made available on our public facing CancerData tool and been used to produce a series of interactive displays. These, along with all the results from this release can be found below.

Outputs available for the 2006-2018 iteration

The outputs for the 2006-2018 iteration, which include an overview of the results and cuts of data split by cancer site then age, gender, stage or cancer alliance are avaialble on the NHS Digital website at the link here

Outputs available for the 2006-2017 iteration include:

A data briefing giving an overview of the 2006-2017 results along with several datasheets are available for this release. The datasheets contain numbers, proportions and Wilson score confidence intervals for a range of factors. The online tools are being updated to include a larger set of data and extended functionality.

  • Data briefing giving a summary of the top level results
  • Data overview: a datasheet with results by Route, cancer site and year
  • Route by sex: a datasheet with results by Route, cancer site, year and sex
  • Route by age: a datasheet with results by Route, cancer site, year and age
  • Route by CCG: a datasheet with results by Route and CCG (2015-2017 combined)
  • Cancer site codes: a datasheet with the ICD10 cancer site codes used in Routes

Where the data value is ".c" this signifies that a value would be meaningless for this group - for example cancer sites without a screening programme cannot be diagnosed through the screen detected Route.

Only all malignant neoplasms (excl. non-melanoma skin cancer), cervix, cervix (in-situ), female breast cancer, female breast cancer (in-situ) and colorectal cancers have values for the screen detected Route.

Outputs available for the 2006-2016 iteration include:

Early figures covering 2006-2016 are available here. The data include a breakdown by year and cancer site to show the general trends over time. The workbook, entitled Routes to Diagnosis 2006-2016 by year, can be downloaded here

Online tools

Workbooks and supporting material

  • Routes to Diagnosis 2006-2016 workbook (a):This spread sheet presents the key incidence and survival statistics from the Routes to Diagnosis work. Two types of data are presented; the percentage of total cancers that are diagnosed by each Route, and the net survival for each Route. The user can select the cancer type of interest, the year of diagnosis or the survival period. Data are presented by sex, age group and deprivation quintile as well as by ethnicity for incidence.
  • Routes to Diagnosis 2006-2016 workbook (b):This spread sheet presents incidence metrics further broken down from the Routes to Diagnosis work. Three sets of data are presented; more detail for the percentage of cancers diagnosed by emergency Routes, results by Cancer Alliance and results for four cancer sites by Clinical Commissioning Group (CCG). A stage breakdown is also included. 
  • Routes to Diagnosis 2006-2016: technical document: This document summarises the data sources and methodology used for this Routes to Diagnosis project, and will be updated in 2019. 

Routes to Diagnosis related studies

Stage by Routes to Diagnosis, 2015-2016

This workbook presents incidence by stage at diagnosis, split by Route to Diagnosis. It is a follow-up breakdown produced for the Cancer Research UK-Public Health England partnership. All malignant tumours newly diagnosed between 2015 and 2016 are included, and split by selected cancers shown in the current stage breakdown in the main Routes to Diagnosis workbook.

Routes and Treatment, 2013-2015

This workbook provides proportions of cancer cases by major treatment types - surgical resection, chemotherapy and radiotherapy - by Route to Diagnosis. Cuts of data by age, stage and co-morbidity score are also included. The work builds off the treatment methodology and overall results found here.

Routes to diagnosis of cancer by stage, 2012-2013

This spread sheet provides the proportion of cancer cases by stage at diagnosis for patients presenting via each of the six presentation routes, for 2012, 2013 and 2012-2013 combined. Detailed information is provided for 10 cancer sites.

Data are stratified by sex, age, socio-economic deprivation quintile and ethnicity. For further information on the methods and caveats, please see the workbook.

Other publications include:

Previous Routes to Diagnosis Outputs

  • Routes to Diagnosis 2006-2015 workbook (a):This spread sheet presents the key incidence and survival statistics from the Routes to Diagnosis work. Two types of data are presented; the percentage of total cancers that are diagnosed by each Route, and the net survival for each Route. The user can select the cancer type of interest, the year of diagnosis or the survival period. Data are presented by sex, age group and deprivation quintile as well as by ethnicity for incidence.
  • Routes to Diagnosis 2006-2015 workbook (b):This spread sheet presents incidence metrics further broken down from the Routes to Diagnosis work. Three sets of data are presented; more detail for the percentage of cancers diagnosed by emergency Routes, results by Cancer Alliance and results for four cancer sites by Clinical Commissioning Group (CCG). A stage breakdown is also included. 
  • Routes to Diagnosis 2006-2015: technical document: This document summarises the data sources and methodology used for this Routes to Diagnosis project. 

Results for the 2006-2015 study have fewer cases assigned to the “unknown” Route due to more complete HES data being available. Having a 10-year cohort to base results from has also an improved examination of time trends with changes between Routes becoming more evident.

Different cancer types show substantial differences between the proportions of cases that present by each Route. Patients presenting via Emergency Routes have substantially lower one-year net survival. Cancer registration and administrative data can be used to robustly categorise the route to a cancer diagnosis for all patients. These categories can be used to explore possible reasons for delayed diagnosis, direct the focus of early diagnosis initiatives and identify areas for further research.

  • Routes to Diagnosis 2006-2014 workbook (a):This spread sheet presents the key incidence and survival statistics from the Routes to Diagnosis work. Two types of data are presented; the percentage of total cancers that are diagnosed by each Route, and the net survival for each Route. The user can select the cancer type of interest, the year of diagnosis or the survival period. Data are presented by sex, age group and deprivation quintile as well as by ethnicity for incidence.
  • Routes to Diagnosis 2006-2014 workbook (b):This spread sheet presents incidence metrics further broken down from the Routes to Diagnosis work. Three sets of data are presented; more detail for the percentage of cancers diagnosed by emergency Routes, results by Cancer Alliance and results for four cancer sites by Clinical Commissioning Group (CCG). A stage breakdown is also included. 
  • Routes to Diagnosis 2006-2014: technical document: This document summarises the data sources and methodology used for this Routes to Diagnosis project.
  • Routes to Diagnosis 2006-2013 workbook (a):This spread sheet presents the key incidence and survival statistics from the Routes to Diagnosis work. Two types of data are presented; the percentage of total cancers that are diagnosed by each Route, and the relative survival for each Route. The user can select the cancer type of interest, the year of diagnosis or the survival period. Data are presented by sex, age group and deprivation quintile as well as by ethnicity for incidence.
  • Routes to Diagnosis 2006-2013 workbook (b):This spread sheet presents incidence metrics further broken down from the Routes to Diagnosis work. Three sets of data are presented; more detail for the percentage of cancers diagnosed by emergency Routes, results by Strategic Clinical Network (SCN) and results for four cancer sites by Clinical Commissioning Group (CCG).
  • Routes to Diagnosis 2006-2013: technical document: This document summarises the data sources and methodology used for this Routes to Diagnosis project.
  • Routes to Diagnosis 2006-2013 preliminary results short reportA short report looking at incidence data from the preliminary 2006-2013 results. The report gives the background to the work, and some initial results including an overview of the emergency presentation route. Note that cancer screening data for colorectal was not available at the time of publication, and as such the addition of these in future will impact the "all malignant neoplasms" group in the report. 
  • Routes to Diagnosis 2006-2013: regional breakdown of emergency presentations: This spreadsheet presents more detail on the incidence metrics for the percentage of cancers diagnosed by emergency Routes.  The four emergency sub-routes are presented by nine regions in England. 

Site-Specific Data Briefings 2006-2013

For the 2006-2013 results a data briefing has been produced for each site, containing a summary of incidence and survival breakdowns from the full data workbook.

  • Routes to diagnosis 2006-2010 workbook (a):This spread sheet presents the key incidence and survival statistics from the Routes to Diagnosis work. Two types of data are presented; the percentage of total cancers that are diagnosed by each Route, and the relative survival for each Route. The user can select the cancer type of interest, the year of diagnosis or the survival period. Data are presented by sex, age group and deprivation quintile as well as by ethnicity for incidence. 
  • Routes to diagnosis 2006-2010 workbook (b):This spread sheet presents incidence metrics further broken down from the Routes to Diagnosis work. Three sets of data are presented; more detail for the percentage of cancers diagnosed by emergency Routes, results by Strategic Clinical Network (SCN) and results for four cancer sites by Clinical Commissioning Group (CCG).
  • Routes to Diagnosis 2006-2010: technical document: This document summarises the data sources and methodology used for this Routes to Diagnosis project.
  • Routes to diagnosis 2006-2008 NCIN Information supplement: This report summarises the Routes assigned for all English patients diagnosed with malignant cancers between 2006 and 2008. Results are broken down by cancer type, age group and deprivation quintile. Associated relative survival estimates are shown for 1, 3, 6, 9 and 12 month survival intervals with 12 month survival also broken down by age group.