Data partnerships

Macmillan works in partnership with the cancer intelligence functions in public health and government organisations across the UK to develop understanding of the cancer population.

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 Digital.

Partnership projects include:

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.

Public Health Scotland

Partnerships include: 

 

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:

  • 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.

The Welsh Cancer Intelligence and Surveillance Unit

Key outputs include:

  • 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.

  • 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.

Stay up to date with our research

You can stay up to date with the latest studies and developments in cancer research in our research section. Alternatively, you can download our research reports and publications.