The cancer registry is saving lives, but you’ve probably never heard of it

It’s fair to say the UK has some way to go to bring cancer survival figures in line with those of the best countries in the world.

And the cancer challenge is getting tougher as the years go by.

Our own recent estimates indicate that by 2035, half a million people are likely to be diagnosed with cancer each year in the UK. That’s a sizeable jump from the 350,000 people who are diagnosed annually today.

The reasons for this are largely down to the population increasing, with people living longer into old age. But there is also a growing challenge from things that increase our risk of cancer, such as obesity.

So how do researchers make these estimates?

It’s all down to high-quality data.

But, understandably, most people don’t know this data exists.

Recent research found that just a third of people (33%) thought they knew either ‘a fair amount’ or ‘a great deal’ about how the NHS uses health data.

And a new report we published recently alongside Macmillan Cancer Support, found out that the same is true for cancer data.

Why good data matters

The UK’s data on cancer leads the world. Each of the four nations has a cancer registry, which shows how many people are diagnosed with cancer at a national level, what treatments they have, how long they live, and, most importantly, whether this is getting better or worse.

The data held in these cancer registries is at the heart of efforts to improve cancer survival, treatment and care. The data has also played a vital role in setting England’s cancer strategy.

The cancer registry is used for:

• Planning NHS cancer services. For example, helping plan how many radiotherapy machines to buy, and where they should go.
• Checking how well the NHS is doing and finding out how it could improve. The NHS and researchers use the cancer registry to monitor how well the service is diagnosing and treating patients; for example it monitors how many people are being diagnosed in an emergency.
• Finding out potential causes of cancer. The cancer registry allows the number of cases of each type of cancer to be tracked over time. It lets researchers investigate possible causes of cancer, helping show, for example, that there’s no good evidence that mobile phones, wifi or power lines cause cancer.
• Supporting patients’ care. For example, if new information emerges about long-term effects of treatment, the cancer registry can be used to track down who had this treatment so that they can have further tests or treatment.

But our study showed that 74% of people affected by cancer – and 80% of the public – have never heard of it.

“I did not know that I had been on the cancer registry for 18 years, but am delighted that such a registry exists,” said one patient.

I’ve never been told anything about it at any point, not even during training

– A GP responding to our survey

“No one ever told me my data was there. Not sure what to think,” said another.

We want this to change because we believe the cancer registry is a critical part of the progress being made against all types of cancer. And our latest research shows we’re not the only ones who think this.

We found a high level of support for how this type of cancer data is used. For example, 3 in 4 people living with cancer (74%) said they ‘strongly support’ cancer data being used for research into treatments.

We also found out that 8 in 10 people living with cancer (83%) think it’s important that they are informed about the cancer registry – and we agree. For this reason, we’ve been working with Macmillan Cancer Support to find ways to raise awareness of it.

Over 3 months we heard the views of 1400 people affected by cancer, more than 340 health professionals and 1000 members of the public, and worked with 20 cancer charities. We ran 9 engagement events around the country, ran 2 surveys and commissioned a piece of independent research.

The message was loud and clear: people think the registry is important and want to know more about it.

Most importantly, we believe that when someone is diagnosed with cancer they should be told about the information that will be collected about them, how it will be used and the choices they have.

Until now, there hasn’t been a way for this to happen. For example, our survey found that 8 in 10 health professionals never have conversations about data with their patients.

This isn’t their fault – it’s because so far they’ve never properly been asked to discuss it.

“I’ve never been told anything about it at any point, not even during training,” said one GP who took part in our survey.

We hope to change that.

What next?

Our report suggests ways to improve awareness of the registry – mostly for people affected by cancer, but also for health professionals and members of the public.

From now on we’ll be working with other charities and national bodies like Public Health England to make sure that people understand more about the registry and how their data is used.

We submitted this work to the Department of Health in September, for inclusion into a wider piece of work looking at how health and care data is managed in England.

This work was led by Dame Fiona Caldicott, the National Data Guardian. And we’re waiting to hear more plans from the Department of Health.

Whatever happens next, we know that in order to reach our ambitious goals of improving survival, this data is crucial.

But there’s a long way to go in making sure everyone knows about it.

And we hope this work will give us, and the NHS, a head start.

Rose Gray is a policy advisor at Cancer Research UK

Read more

• Find out more about the cancer registry on our website