Macmillan Cancer Support and Cancer Research UK are calling for health professionals to be better equipped to talk to patients about cancer registration and about how their data is used, in a new report released today.

Results from independent research commissioned by the charities show that more than four in five cancer patients in England (83%) feel it is important that they are told about cancer registration and the choices they have about their data being included. 

Sarah Woolnough, Cancer Research UK’s Executive Director of Policy and Information, said “It’s difficult to overstate just how important cancer data is. High-quality population-based data helps the health service plan for how to best deliver world-class care and treatment to the tens of thousands of cancer patients it looks after every week. This data shows how many people are diagnosed with cancer, and how many are surviving the disease. And data shows us whether this is getting better or worse."

"Understanding the effectiveness of treatment, what equipment to invest in and where people will need care also relies on this. We believe health professionals, people affected by cancer and the public should know about this vital resource.”

Support for the principles of cancer registration is also high, especially among people living with cancer.

Support for the principles of cancer registration is also high, especially among people living with cancer.

When given a brief description of how the registry uses cancer data, 85% are in favour of this being used to plan services and research treatment.

Cancer registries store information on cancer patients in order to support public health, service improvement and research.

They support genetic counselling and can provide information on patients who have received particular treatments if they require follow-up care.

The registries have been at the heart of ongoing improvements to cancer survival, treatment and care.

The charities found that patients strongly support the idea of discussing cancer registration during a face-to-face conversation with a health professional.

So the charities are calling on cancer teams to be able to answer basic questions about cancer registration, and to provide relevant information to their patients.

As a simple first step, hospitals should ensure that the patient information leaflets about cancer registration that are provided by Public Health England are available for staff to use and on prominent display to patients.

Both charities have also published new online resources to support health professionals and will be working with Public Health England to continue to raise awareness.

The joint report follows a review into how health and social care data are managed in England, which was led by Dame Fiona Caldicott, the National Data Guardian.

Published in July 2016, the review identified a need to improve the way that people are currently informed about cancer registration, and how health and care data are used more generally.

Dr Fran Woodard, Macmillan Cancer Support’s Executive Director of Policy and Impact, said “All health professionals who care for people affected by cancer have a role to play in ensuring that they are aware of how their data is used. It’s clear that patients want this information, and they care about being able to make informed decisions about their data. Our charities will work with Public Health England and other organisations to make sure that health professionals are supported to have these conversations with their patients in the right way at the right time.”

Source: Cancer Research UK & Macmillan Cancer Support