Cancer registration is the collection of information (data) on all cases of cancer that occur in England and is the responsibility of the National Cancer Registry and Analysis Service (NCRAS), a department of Public Health England. It has strict and legal safeguards to keep the data secure.
The data is used in many ways to support improvements in cancer care and treatment including:
- allowing us to work with healthcare professionals and the NHS to assess the quality of care for all individuals treated for cancer and improve cancer care
- benefiting those investigating family cancer risks
- support research into new and improving treatments or preventative medicines
We have legal permission to collect this data without asking for consent (under section 251 of the NHS Act 2006,) but individuals can request to have their data removed through an opt- out process.
Recently, Cancer Research UK and Macmillan Cancer Support undertook a Review of Informed Choice to better understand how aware people are of cancer registration and the work of NCRAS. This highlighted the need for NCRAS to increase awareness about how it obtains and uses cancer information, particularly with cancer patients, carers, health professionals and the public. One key recommendation is to review the existing information available to patients and public, such as the cancer registration information leaflet.
To ensure the information needs of people recently diagnosed with cancer are met we are inviting people with experience of living with or caring for someone with cancer to a series of workshops to look at this in more detail. These will provide an overview of what we do, look at the current information materials and ask how these can be improved. Other ideas and suggestions on how to increase awareness will be explored to inform our future plans.
Workshops are being held across England in January and February 2017 and will last a maximum of 3 hours. We will organise and pay for your travel, and refreshments will be provided. You do not need any prior involvement with this work, just a willingness to contribute to the discussion.
Workshop dates and locations:
31st January – Nottingham
8th February – Leeds
17th February – London
For more information and to register your interest in taking part please email
Aileen.Guyatt@phe.gov.uk or call us on 07919 214528