National Cancer Intelligence Network
The National Cancer Intelligence Network (NCIN), part of Public Health England, is a UK-wide initiative, working to drive improvements in standards of cancer care and clinical outcomes by improving and using the information collected about cancer patients for analysis, publication and research.
Macmillan Cancer Support and the National Cancer Intelligence Network are working in partnership to:
use data and information to push the boundaries of understanding of the whole cancer population, now and in the future, of the impact and costs of cancer and its treatment on patients, the wider community and the NHS,
work to enable wider health and social care services to extend the usage of this information to improve the care, experience and outcomes for patients by designing, testing and implementing better models of delivery.
Painting a picture of the cancer population
We know that there were 2 million people living with cancer in 2010, and currently (2015) 2.5 million people are living with cancer. In the UK this will rise to 4 million by 2030.
Working in partnership; the Macmillan-NCIN UK Cancer Prevalence Project provides a greater understanding of the population of people living with cancer.
What’s new? For the first time we have detailed prevalence data available by: cancer type, deprivation group and local area, as well as age, sex, and time since diagnosis.
The UK data briefing is available on the NCIN website.
Summary findings for the following nations are also published by Macmillan:
UK data briefing and data tables:
-UK by nation, age and deprevation; UK by nation, first and subsequent cancer
England briefing [PDF] and data table by Area Team, CCG, Local Authority, and Strategic Clinical Network.
Scotland briefing [PDF] and data table by Cancer Network, NHS Board Area, and Local Council Area.
Northern Ireland briefing [PDF] and data table by Health and Social Care Trust, and Local Government District.
Wales briefing [PDF] (also available in Cymraeg) and data table by Cancer Network, Health Board, Local Authority, and upper super output area.
These summary briefings are also supported by a series of data tables containing the most detailed prevalence data we have ever had, alongside guidance on interpretation and use, for more information see the NCIN website.
We also presented the three following academic posters, which look at the UK Cancer Prevalence Project in more detail, at the Cancer Outcomes conference in June 2015:
The Macmillan-NCIN UK Cancer Prevalence Project is part of the Macmillan Cancer Support and Public Health England’s National Cancer Intelligence Network Partnership Work Plan. The Project is supported by the Knowledge & Intelligence Team (East) at Public Health England. Data are sourced and presented in collaboration with the Welsh Cancer Intelligence and Surveillance Unit, Health Intelligence Division, Public Health Wales, the Scottish Cancer Registry and the Northern Ireland Cancer Registry, funded by the Public Health Agency for Northern Ireland. See more information here.
Linking Outcomes and Patient Experience - CPES linkage
On behalf of Macmillan and Cancer Research UK, the National Cancer Intelligence Network (NCIN) have linked the Cancer Patient Experience Survey (CPES) datasets from past surveys in England with data held in the cancer registrations database. This linkage work includes CPES surveys from 2010, 2011-12, and 2013. There are plans to link 2014 survey data in due course. The project initially describes these data for future analytical use to further extend the possibilities of cancer patient experience data in particular exploring links between experience and outcomes. Reports from this project are published on the NCIN website.
We will be carrying out further analysis of this dataset in 2016 to expand our evidence base and expertise in patient experience and outcomes for use in our work across the organisation.
The Macmillan-NCIN Work Plan
To help achieve Macmillan's ambition to reach and improve the lives of everyone living with cancer and inspire millions of others to do the same, we are working in partnership with the NCIN and have developed a Macmillan-NCIN work plan. The objectives of the work plan are to:
provide high quality information on health and its determinants to decision makers who can make changes to improve the lives of the cancer population
describe quantitatively the disease burden of cancer across the whole of the cancer pathway and to develop a strategic approach that will pave the way for large scale analysis across cancer types.
identify key and develop new routine ‘cancer population statistics’.
understand the needs of the cancer population, the health and social impacts of cancer (including cancer recurrence and metastatic disease) and the consequences of its treatment.
understand the ‘cost of cancer’, understanding the cost of providing pathways and model the cost of optimal pathways of care.
understand the linkages between clinical outcomes, patient experience and PROMs (patient reported outcome measures).
scope data requirements for social care and identify potential sources for the development of these datasets (including the extent of provision and cost of providing social care).
continue to develop relationships across UK nations and to access data and influence the range and depth of data collection and quality of recording, understanding what data is available and what the gaps are.
For more information about the partnership, work plan priorities and future work download the summary.