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.
We’re working with National Cancer Registration and Analysis Service (NCRAS) part of the National Disease Registration Service (NDRS) in NHS Digital.
Partnership projects include:
- Exploring the population living with treatable but not curable cancer.
- Producing this paper - Treatable but not curable cancer in England: a retrospective cohort study using cancer registry data and linked data sets | BMJ Open.
- Publishing prevalence data - CancerData.
- Describing inpatient admissions and outpatient appointments in the first year post cancer diagnosis.
- Analysing emergency admissions towards end of life.
These projects use data that has been provided by patients and collected by the NHS as part of their care and support. The data are collated, maintained and quality assured by the National Disease Registration Service, which is part of NHS Digital.
Scottish Routes from Diagnosis
In Scotland, there are huge variations in patient pathways and needs following a cancer diagnosis. Scottish Routes from Diagnosis uses data shared by patients and collected by the NHS to better understand these variations.
In partnership with Information Services Division (ISD) of NHS National Services Scotland (now Public Health Scotland), we linked and analysed data on the experiences of over 31,000 people in Scotland diagnosed with breast, colorectal, lung or prostate cancer in 2007 and in 2012.
We then developed ‘Survivorship Outcome Groups’ (OGs) – robust definitions of health outcomes that can apply across and within cancer types. The findings will be used to inform service development, helping the healthcare system adapt to the reality of living with cancer in Scotland today.
Read the report
Cohort Summary (PDF)
Context and methodology (PDF)
You can also explore the data through ISD’s interactive tool
- More people are surviving their cancer than ever before, 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.
- Five years after diagnosis, more than a third of people (36%) had experienced a new diagnosis of cancer, or were living with cancer that had never been cured or had spread.
- There is a huge variation in health outcomes between cancer types, and in people with the same cancer type:
- In people with breast, prostate or colorectal cancer, five years after diagnosis almost 40% had experienced a new diagnosis of cancer, or were living with cancer that had never been cured or had spread. This is compared to just 27% of lung cancer patients.
- Around two thirds (65%) of people diagnosed with lung cancer died within a year, compared to only 6% of breast cancer patients, 8% of prostate cancer patients and 27% of colorectal cancer patients.
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
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.
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:
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.
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.
Key outputs include:
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.
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.