Patients' Frequently Asked Questions about the Cancer Registration Patient Information Leaflet

INTRODUCTION

These Frequently Asked Questions (FAQs) are based on issues raised by patients and carers during the formal testing and piloting of the new patient information leaflet. They are intended to be useful to patients who, having read the leaflet, would like more information about the cancer registration scheme. They are also intended to provide additional background information for health professionals as an aid to dealing with any issues raised by patients.

1. The leaflet states that cancer registration is ‘allowed by law’. What is the legal basis for the national cancer registration scheme?
2. The national cancer registration scheme has been established for more than 50 years. Why is a patient information leaflet being distributed now for the first time?
3. What information is collected by registries?
4. How is the information collected?
5. Why is it necessary to collect identifiable information?
6. Why can’t registries use the NHS number instead of name and address?
7. Under what circumstances do cancer registries release identifiable data?
8. What is the information from cancer registries used for?
9. What are the benefits of the national cancer registration scheme?
10. Can patients opt out of the national cancer registration scheme?
11. Are there any implications if a patient chooses to opt out of the cancer registration scheme?
12. If a patient or health professional wants more information about how the cancer registration scheme works in their local area or has any concerns they would like to discuss, whom do they contact?
13. If a patient wants to opt out of the cancer registration scheme, what do they have to do?