Wednesday 30th November 2016

What cancer data does the NHS collect?

Currently, every cancer patient’s data is collected automatically and put into a database called the cancer registry as soon as they are diagnosed, but people can opt out of being on it whenever they want. There are different registries in each of the four UK nations.

Why are the registries important?

 They tell us how many people in the country are diagnosed with cancer, how they’re treated and what their outcomes are. It means that the NHS can plan cancer services, measure how we compare with other countries around the world and provide the best possible experience for patients. For us, all this information is really important - teenage and young adult cancer is so rare that we need to know as much about it as possible to provide the help young people need.

In fact, the biggest problem with the cancer registry might be how few people know about it.

What do we know?

This summer, we decided to ask young people what they thought about the registry; 87% of those over 18 hadn’t heard of it. This made us realise how important it is to make sure that young people with cancer are told about the registry and that they understand that they have the right to choose whether to share their information with it or not. In fact, once young people had heard a bit about what a difference it could make, 78% didn’t have a problem with the idea of the NHS using their data to help themselves and others. You can read more about all our findings in the full report above.

What’s going to change?

Right now, the Department of Health is figuring out whether it needs to simplify the way in which patients can choose for their information to be used by the NHS – including with the cancer registries. Nobody is quite sure what effect this would have on the cancer data, but there’s a chance that if change happens too quickly, it could mean that the quality of the data in the registry is reduced, meaning it would be much harder for us to be sure we know enough about the cancer journey for teenagers and young adults .

What are we doing?

The Government haven’t made a decision yet, and they’ve been asking for the views of patients, charities and health bodies to help inform what happens next.  Over the last few months, we’ve been working with Macmillan and Cancer Research UK to make sure the public and the Government know how important the cancer registry is and how much it helps us to give patients the best experience possible. We’ve also started to fund a position at Public Health England; our analyst will make sure that teenage and young adult cancer data is given all the attention it deserves.

But most of all we want young people to understand who is using their data and where it goes. Over the next few months, we’ll be working on ways to spread the word about the cancer registry and patient data through our own services and by talking to other charities.

We want to educate young people so that they can be empowered to make an informed choice about whether and how the NHS uses their data.

What are other people saying?

We asked Jem Rashbass, the National Director for Disease Registration  and Cancer Analysis at Public Health England, what he thought about the questions around cancer registries and our work to find out what young people think about how the NHS uses our data. He said:

“This is great report by an outstanding charity that works tirelessly to support teenagers and young adults with cancer. Cancer in this group is rare but data is one of the most powerful tools we have to fight the disease. We use it in many ways such as in research to understand more about cancer, to identify the best ways to treat each person, to make sure that everyone gets the best outcomes and to recognise any long-term effects that may only appear many decades after treatment. The data is collected by the cancer registry, as it has been for many years – we don’t sell it to anyone and my absolute responsibility is to protect your confidentiality. But it is your data and if you want you can opt out – but as the report says “The openness to and enthusiasm for data collection which we found in our survey should be supported and encouraged – these patients can set the tone for the next generation of NHS users”. So I am very grateful for your support and that of the Teenage Cancer Trust – please get in touch if you want to find out more about us!

Cancer Research UK and Macmillan have also been working hard to find out what cancer patients and the rest of the public think about cancer registries. They found that:

“We were struck by the overwhelming support shown for the cancer registry by people affected by cancer and health professionals, as well as a desire to learn more about the registry and the use of data more broadly. We heard from people affected by cancer that the majority wanted their data to be used but they wanted to know for what reason, by whom, and that it was secure. We heard from health professionals that, with the right support, starting conversations about the use of data with patients would be both manageable and important.”

If you’ve got any thoughts on this or anything else policy-related, we’d love to hear from you