Using cancer data stories to show the importance of patient information to improve cancer care
How many people have cancer in England? What types of cancer do they have? How are they diagnosed, and how well does the treatment work? And how can we work together to make the improvements needed?
These are the types of questions that Public Health England’s National Cancer Registration and Analysis Service (NCRAS) tries to answer.
NCRAS collects information about people with cancer from across the NHS to create England’s cancer registry. The process of collecting and storing information about cancer is called cancer registration. NCRAS holds the largest collection of cancer data in the world and uses it to improve how cancer is diagnosed and treated.
Over the last few months we have been working on a new way to communicate how exactly patient information is used to improve cancer care. With help from cancer patients, carers, health care professionals and the public we have created a selection of cancer data stories. We are launching these stories today to celebrate 2019’s Health Information Week #HIW2019.
We are launching two stories which describe how data has been used recently in NCRAS. One story describes how a research study had led to development of a consent form for chemotherapy to encourage patients and doctors to choose the best care possible. And the second story describes how Pancreatic Cancer UK is using publicly available NCRAS data to campaign for faster treatment for pancreatic cancer. We will publish more stories over the next few months.
These stories have been created to inform those affected by cancer, healthcare professionals, and the public about why patient information is needed to improve cancer care. They are also designed to reassure readers that patient information is being used appropriately to improve public health, and to create greater transparency about the work of NCRAS.
Why it’s important to know about cancer registration
In 2016, the National Data Guardian, who advises the health system to make sure patient information is kept safe and used properly, asked Cancer Research UK and Macmillan Cancer Support to investigate how cancer data is used. They found out that not enough people know about cancer registration and how cancer data is used.
NCRAS has permission from the government to collect patient information without first seeking a patient’s consent. This is because it’s important to have as much information as possible to understand more about cancer and to help the NHS treat it better. This privilege is reviewed yearly to make sure NCRAS continues to meet the relevant requirements.
Because patient information is collected without consent it is so important that patients and the public know why NCRAS collects data, how it is used, and how it is kept safe. And patients should know that they can ask for their information to be removed from NCRAS if they wish.
And so, over the last few years we have been working on increasing awareness of what happens to patient information and how it is used. We have developed a patient information leaflet which is sent to hospitals to give to patients, designed a new website, and now we have created these cancer data stories.
What patient information does NCRAS collect?
Patient information is automatically sent from the NHS to NCRAS and includes:
- Patient name, gender, age, ethnicity, NHS number, address and postcode
- information about their cancer and what treatment they have received
Why does NCRAS collect patient information? How is the data used?
There are around 300,000 malignant tumours diagnosed each year in England. NCRAS collects the data to support the NHS, researchers, charities, cancer patients and the public understand what is happening with cancer in England.
NCRAS uses data to:
- Understand cancer
- Improve diagnosis
- Improve treatment
- Plan NHS services
- Evaluate Policy
- Support genetic counselling
Do I need to give NCRAS my information? Can I ask for my details to be removed?
If you have been diagnosed with cancer, your information is automatically included so you do not need to do anything. You can choose to opt-out of cancer registration at any time, visit here for more information about opting out.
Find out more
If you are a charity, a hospital, a patient, a carer, or a healthcare professional and you have a cancer data story to share or any other enquiries, please get in touch with NDRengagement@phe.gov.uk.