HC 1048-III Health CommitteeWritten evidence from the National Cancer Intelligence Network (PH 117)

Summary

1. The National Cancer Intelligence Network (NCIN) was established in 2008 as part of the implementation of the Cancer Reform Strategy. Its role is to coordinate national developments in information and intelligence, and it has a key role in the oversight of the regional cancer registries in England.

2. The National Cancer Intelligence Network (NCIN) is a partnership organisation, funded largely through the DH in England, with substantial investment from Macmillan Cancer Support, and further investment from Cancer Research UK.

3. The NCIN is located alongside the National Cancer Action Team (NCAT), and reports to the National Cancer Director, the DH Cancer Programme Board and the Board of the National Cancer Research Institute (NCRI).

4. The NCIN has already succeeded in improving the collection and coordination of information by bringing together data specialists, organisations and datasets and linking clinical, demographic and performance data from a range of sources. This has resulted in the generation of new analyses and insights, as the well as the provision of clearer and more accessible information for cancer commissioners.

5. The information collected by cancer registries, Hospital Episode Statistics (HES), the cancer waiting times database and national clinical audits is largely complementary. Linkage of these datasets has enabled important new analyses to be undertaken, which would previously have been impossible.

6. The relationship between the NCIN and the regional cancer registries is key in ensuring continued improvements in consistency of data is exploited at the national level to drive outcomes and deliver for the requirements of cancer patients within the information revolution.

7. The NCIN works closely with other key national areas of cancer planning and delivery, in NCAT. There will need to be continued strong working links between NCAT and the NCIN once the NCIN moves to PHE and the NCAT moves into the NHS Commissioning Board. The role played by the National Cancer Director in having oversight of these two domains will be crucial.

Introduction to the Submitter

Chris Carrigan is the head of the National Coordinating Team of the National Cancer Intelligence Network (NCIN). His role is to lead, steer and develop the structure, composition and outputs of the NCIN, which launched in June 2008.

Sitting within the umbrella of the National Cancer Research Institute, the NCIN is a UK-wide initiative working to drive improvements in standards of cancer care and outcomes by improving and using the information collected about cancer patients for analysis, publication and research.

Factual Information

8. The National Cancer Intelligence Network (NCIN) was launched in June 2008 as part of the implementation of the Cancer Reform Strategy. The NCIN brings together epidemiologists from the eight regional cancer registries in England and the Office for National Statistics (ONS), leading clinicians and experts in the analysis of large administrative datasets (eg Hospital Episode Statistics—HES).

9. The NCIN oversees and works closely with the regional and national cancer registries in the UK, and in particular in England.

10. The NCIN receives the bulk of its funding from the Department of Health, with NHS London acting as the financial host organisation. In 2010–11 the allocation was £4.2 million. In 2011–12 the proposed allocation is reduced to £3.55 million.

11. From 2011–12 onwards, Macmillan Cancer Support have committed to fund up to £0.5 million per year. Further funding to cover a post dedicated to enabling research is received from Cancer Research UK, the MRC, the National Cancer Research Network and the NCRI.

12. At the end of 2010–11 the central NCIN Coordinating Team had a headcount of 16.6 WTE, comprising staff employed by a range of organisations within the network.

13. The NCIN funds a range of work across the network, mainly with the regional cancer registries in England. The NCIN funds 13 specialist “cancer lead area” roles, spread across the registries. Each lead area role receives an allocation of £100k.

14. The NCIN also resources the building and maintenance of several national analytical resources and toolsets, including the National Cancer Data Repository, the National Cancer Information Service, the Cancer e-atlas and the Cancer Commissioning Toolkit.

Core Roles and Functions of the NCIN

15. The NCIN links the information collected by cancer registries with HES, the cancer waiting times database and cancer screening. Linkage of these national datasets has enabled important new analyses to be undertaken, which would previously have been impossible.

16. Key analyses undertaken by NCIN since launching in June 2008 include:

Cancer incidence and survival by ethnic group.

Major resection rates by cancer site and age.

Incidence and mortality by gender for cancers affecting both men and women.

Mortality trends by age group.

Overall prevalence of cancer, and prevalence by age and cancer site.

Trends in admissions, lengths of stay and bed utilisation by cancer patients.

Numbers of patients presenting as emergencies by cancer site, and the impact of emergency presentation of survival.

17. The NCIN also has a major role in making information on all aspects of cancer available to commissioners and to NHS providers through the Cancer Commissioning Toolkit.

18. The NCIN has worked closely with cancer registries in England to deliver year on year improvements in timeliness of registration. From 2011–12 the NCIN will begin to take a stronger role in the management of the contract for cancer registration as part of the transition of registries and NCIN into the new PHE framework.

19. The NCIN funds 13 clinical reference groups, and funds a distributed national analytical infrastructure to support the analytical requirements of these groups. This distributed infrastructure is based in the regional cancer registries in England.

20. The NCIN aims and objectives cover five core areas to improve the quality and availability of cancer data from its collection to use:

Promoting efficient and effective data collection throughout the cancer journey.

Providing a common national repository for cancer datasets.

Producing expert analyses, to monitor patterns of cancer care.

Exploiting information to drive improvements in cancer care and clinical outcomes.

Enabling use of cancer information to support audit and research programmes.

The Role of the NCIN in the New NHS

21. The work being done by the NCIN is at the forefront of two of the key strands of Liberating the NHS: The Information Revolution and the Focus on Outcomes.

22. The NCIN will continue to develop closer integration and links with the NHS Information Centre, to ensure the IC role (to collect and supply national data and statistical information in health and social care) is augmented by the NCIN.

23. The NCIN will further develop and establish its role as the primary source of data on cancer services. As part of the Information Revolution, and in support of the overall transparency agenda, information will be made openly available such that other organisations, including charities, are at liberty to present information as they wish.

24. The NCIN needs to continue to collate and publish high quality information on different aspects of cancer services and ensure that it is used to support decision making by the NHS and patients and those seeking to scrutinise the quality of cancer services.

25. Working with and across the cancer registries, the NCIN will develop and manage a single national integrated work programme for cancer intelligence. This programme will be a significant asset to PHE and will enable transition into PHE to progress more smoothly.

26. The relationship between the NCIN and the regional cancer registries is key (both for data and analysis).

Risks

27. As with any transition and period of uncertainty, retaining key people is an important factor to ensure continuity and to provide a solid platform from which to build. There are particular difficulties in this area within the NCIN and across the registries which are hosted by SHAs or PCTs. It is becoming increasingly difficult to renew key contracts of employment, or place new contracts beyond March 2012.

28. The enviable position of the NCIN, sitting beneath the National Cancer Director and alongside other key areas of cancer delivery (in particular the National Cancer Action Team and Cancer Peer Review) must be recognised in the new PHE structure. The strengths of this relationship must be maintained and built upon. This could prove challenging in a period of major change and uncertainty.

29. The NCIN has always been seen with a high level of “ownership” by the cancer community, and in particular by the NCRI Partners, by the major cancer charities and by the national patient and consumer groups. With this “ownership” has come strong support across the community, which has enabled the NCIN to develop quickly and flexibly.

30. Unless the cancer registries within PHE are able to continue to work in partnership with the NCIN and be commissioned to undertake work (eg lead areas) then there is a risk to NCIN’s work.

31. The NCIN role spans the breadth of cancer intelligence. It is important that the benefits of the move to PHE embrace and further develop the role of the NCIN to continue to support public health intelligence, service monitoring and outcomes and further drive use of cancer data for research (with NCRI partners).

June 2011

Prepared 28th November 2011