Data partnerships
Working in partnership
These partnerships give us indirect access to their secure patient level databases, connections to their expert analysts and potential to influence cancer intelligence work outside of the partnership.
All partnerships aim to use data to improve the understanding of the cancer population now and in the future.
Each partnership has a range of projects within it. This analysis is concerned with the whole of the cancer journey and will utilise a broad range of data sources.
The main source of information in each partnership is the cancer registry, an information system designed for the routine collection, storage, management, and analysis of data on persons with cancer.
The partner organisations also have various levels of access to other datasets; for example, records of (inpatient and outpatient) hospital activity, details of primary care prescriptions and results of the Cancer Patient Experience Survey.
National Cancer Registration and Analysis Service: England
We’re working with National Cancer Registration and Analysis Service (NCRAS), part of the National Disease Registration Service (NDRS) in NHS England, to use data that has been provided by patients and collected by the NHS as part of their care and support to develop evidence to improve understanding of the needs and experiences of people living with cancer. The data we use is collated, maintained and quality assured by the NCRAS.
Partnership projects include:
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Understand diversity within the cancer population
- An analysis of the number of cancers by diagnosis Trust – This workbook provides data broken down by age, deprivation, ethnic group and gender.
- Exploring cancer incidence by MOSAIC classification - This workbook provides a breakdown of 2016 incidence data by MOSAIC classifications, which examine demographics, lifestyles, preferences and behaviours to build detailed classifications of the England population.
- An analysis of cancer deaths by place and deprivation.
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Treatable but not Curable Cancer
A ground-breaking project to provide evidence on the size of the Treatable but not curable cancer (macmillan.org.uk) population and their characteristics to support wider work in this area. Resulting in:
- An article in the BMJ open - Treatable but not curable cancer in England: a retrospective cohort study using cancer registry data and linked data sets | BMJ Open
- An Excel Workbook: Macmillan-NCRAS Treatable but not Curable Workbook which provides an updated breakdown of the population identified as likely to be living with Treatable but not Curable cancer in England. It provides estimates of the prevalence at the end of 2015 and the 2015 incidence.
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Understanding the care and support provided to people living with cancer
- Building understanding of Holistic Needs Assessment data collected by NCRAS and how this can be used to understand who is receiving an assessment and Personalised Care and Support Plan.
- A paper on inpatient admissions and outpatient appointments in the first year post cancer diagnosis.
- Analysing emergency admissions towards end of life.
- Developed with Cancer Research UK the methods to link the results of the National Cancer Patient Experience Survey to other NCRAS datasets as described in the data briefing, technical summary, descriptive overview of respondents’ characteristics and detailed data by cancer site.
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Understanding the number of people living with cancer (prevalence)
- A dashboard of cancer prevalence statistics showing people alive in 2019 diagnosed with cancer in the past 25 years. With an accompanying excel file including data split by Local Authority.
- An Excel file describing people alive in 2015 diagnosed with cancer in the past 21 years by Local Authority and region, cancer alliance, sustainability and transformation partnership (STP), and clinical commissioning group (CCG). These workbooks were published by the Transforming Cancer Services Team for London (TCST) in partnership with Macmillan Cancer Support and NCRAS.
- An Excel file describing people alive in 2013 diagnosed any time before this (complete prevalence). Based on a new methodology described in UK Complete Cancer Prevalence for 2013 Technical Report and a June 2016 conference poster from the IARC & PHE Cancer Data and Outcomes Conference 2016: UK Complete Cancer Prevalence: How many people are living with cancer in 2013?.
- Excel files describing people alive in 2010 diagnosed with cancer in the past 20 years. Including:
- Cancer Prevalence UK Data Tables for UK nations and UK combined by cancer groups, 21 common cancer sites, 47 detailed cancer sites, age, sex, TSD, age at end of 2010, age at diagnosis and deprivation scores
- Cancer Prevalence UK Summary Data Table
- England Cancer Prevalence Tables for 21 common cancers – by Area Team, CCG, Local Authority, Strategic Clinical Network
- Wales Cancer Prevalence Tables for 21 common cancers – by Cancer Network, Health Board, Local Authority and upper super output area
- Scotland Cancer Prevalence Tables for 21 common cancers – by Cancer Network, NHS Board Area and Local Council Area
- Northern Ireland Cancer Prevalence Tables for 21 common cancers – by Health and Social Care Trust and Local Government District
- Macmillan-NCIN UK Cancer Prevalence Project Acknowledgements
Public Health Scotland
Partnerships include:
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Scottish Routes from Diagnosis
Scottish Routes from Diagnosis (SRfD) was a project between Public Health Scotland (formerly Information Services Division, ISD) and Macmillan, which investigated survivorship outcomes and experiences of residents of Scotland. It focused on the four most common types of cancer found in Scotland: breast, prostate, colorectal and lung, using national datasets from 2007 and 2012.
The project developed survivorship Outcome Groups (OGs), which capture the survivorship experiences in four different groups and allows comparisons across (as well as within) cancer types. Reporting patient factors, pathways, and outcomes using these outcome groups allows for investigation into the very different experiences people can have following a cancer diagnosis, both within a particular cancer type and across different types.
Please note that this publication is based on data relating to cancer prior to the COVID-19 pandemic. Consequently, caution may be required in generalising these results to later time periods.
Read the reports
- Scottish Routes from Diagnosis: Comorbidities (PDF)
- Scottish Routes from Diagnosis: Comorbidities Summary (PDF)
- Scottish Routes from Diagnosis: Multiple Cancers and Metastatic Disease (PDF)
- Scottish Routes from Diagnosis: Multiple Cancers and Metastatic Disease Summary (PDF)
- Scottish Routes from Diagnosis: Mortality and End of Life Care (PDF)
- Scottish Routes from Diagnosis: Mortality and End of Life Care Summary (PDF)
- Cohort Summary (PDF)
- Context and methodology (PDF)
- Results: The cohorts up close (PDF)
- Discussion (PDF)
You can also explore the data through ISD’s interactive tool
Key findings
- Survival rates were better for the 2012 cohorts compared to the 2007 cohorts, 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.
- There is a huge variation in health outcomes between cancer types, and in people with the same cancer type:
- At least one quarter of people in all cohorts had a diagnosis of one or more chronic conditions prior to the cancer diagnosis. This ranged from 26% for breast cancer to almost half of lung cancer patients (47%).
- In the 2012 cohorts, in the total 15-year period (10-year lookback, 5-year follow-up), more than 1 in 8 people in the prostate, lung and colorectal cancer cohorts had at least one other tumour.
- The breast cohort had the highest overall five-year survival rate at 78%, whilst the lung cohort had the lowest overall five-year survival rate at 10%. Around half of the cohort survived for six months or less.
- In the lung cancer cohort’s survival was better in those who had another cancer diagnosed in the year prior to the lung cancer diagnosis. Earlier presentation of the lung cancer due to investigations for other tumours may be a partial explanation.
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Deprivation and cancer survival in Scotland
Survival analysis by deprivation, sex and cancer site were produced for the 20 most common cancers in Scotland (2013 incidence). Multivariate analysis was carried out where cancer types demonstrated statistically significant variation between the most deprived and least deprived for one-year survival and five-year survival. The research below sheds light on the drivers of variation, such as:
- stage at diagnosis
- access and use of screening programmes
- co-morbidities.
Deprivation and survival analysis reports
- Cancer Survival and Deprivation Technical Report [PDF]
- Technical Report Appendices A-C [PDF]
- Technical Report Appendix D [PDF]
- Breast Cancer Survival and Deprivation Brief [PDF]
- Colorectal Cancer Survival and Deprivation Brief [PDF]<
- Head and Neck Cancer Survival and Deprivation Brief [PDF]
- Liver Cancer Survival and Deprivation Brief [PDF]
- Lung Cancer Survival and Deprivation Brief [PDF]
- Prostate Cancer Survival and Deprivation Brief [PDF]
- Cancer Survival and Deprivation Methods Brief [PDF]
We have also created Data landscape relevant to the Macmillan-ISD Partnership objectives.
Northern Ireland Cancer Registry
The N. Ireland Cancer Registry is in the Centre for Public Health, Queen's University Belfast and is funded by the Public Health Agency for Northern Ireland.
Key outputs include:
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Northern Ireland GP Federation Cancer Profiles
In early 2018, the NICR completed work to profile and compare the cancer populations in each of Northern Ireland’s GP Federations. Based on this analysis, the NICR produced a detailed factsheet on each GP Federation, including data on incidence, prevalence, age and stage at diagnosis.
NICR’s GP Federations central report 2011-2015 [PDF] brings together all of the factsheets and also presents detailed analysis across the GP Federations. It identifies how cancer incidence and prevalence in each GP Federation differs from Northern Ireland trends, broken down by age group, gender, cancer type, time since diagnosis, stage at diagnosis, deprivation quintile, etc. -
Cancer Data Landscape in Northern Ireland 2018
The NICR has also produced a report on the cancer data landscape in Northern Ireland [PDF] in 2018. The report summarises the NICR’s current way of working, the data it holds and has access to as well as other external datasets to which NICR data could potentially be linked for public benefit.
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Emergency admissions in Northern Ireland
Macmillan and NICR examined outcomes for more than 4,300 patients in the last year of their life, resulting in a set of recommendations for improving cancer services. Read the latest Emergency Admissions summary.
The Welsh Cancer Intelligence and Surveillance Unit
Key outputs include:
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Landscaping paper
The paper provides insight into the unique characteristics of cancer data in Wales, highlighting any gaps in availability between Wales and other UK nations and informing opportunities for analysis considering the partnership’s objectives.
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Understanding the local cancer population in Wales
The first phase of this project investigates the incidence and prevalence profile of people diagnosed with and living with cancer at GP Cluster level. The result of this work is the GP Cluster Network Dashboard which can be accessed in English and Welsh. The second phase investigated the incidence of co-morbidities across the GP Clusters, including which are most common. This helps inform services about the intensity of need at the local level.