Using cancer data to improve outcomes
Why data matters
The NHS routinely collects information about all patients, for both clinical and management purposes. This comes in many forms, from pathology reports to decisions made at multidisciplinary team meetings, records of radiotherapy and chemotherapy treatment to administrative details such as time and place of admission.
Making this data useful to understanding cancer outcomes and clinical practice means finding consistent and useful ways to record, extract and analyse it, as otherwise it cannot be linked and its wider value would be lost.
The National Cancer Intelligence Network
The National Cancer Intelligence Network (NCIN) is a UK-wide initiative that drives improvements in standards of cancer care and clinical outcomes by improving and using the information collected about cancer patients for analysis, publication and research. It was initiated by the NCRI in 2007 in response to the Cancer Reform Strategy for England.
The NCIN’s vision is to create ‘the best cancer information system in the world’, and it brings together NHS cancer organisations, national cancer registries, clinical champions, health service researchers and a range of other interested parties. A key part of their work is linking records from different parts of the health service (for example, GP records and hospital records) and making them available for analysis.
In 2013 the NCIN became part of Public Health England, and will share the expertise built up in cancer so that health intelligence networks can be developed in other key disease areas.
Using data for research
Large scale datasets like those the NCIN is helping to join together are extremely valuable for research. The NCIN works with researchers and funders to help properly authorised studies to work with these data.
The NCIN is also involved with a number of national projects where data is a critical part of their objectives. For example, UK Biobank is collecting tissue samples from healthy people and NCIN is ensuring they can access records on those who go on to develop cancer, so that the samples can be studied for links with the disease. They have also been working with the cancer networks to explore how clinical records could supplement data from clinical trials, which would be an efficient way to provide ‘real world’ evidence of treatment effects.