We need to talk about data

This week we have a guest blog from Fran Woodard, Executive Director of Policy and Impact at Macmillan Cancer Support, and Sara Hiom, Director of Early Diagnosis and Cancer Intelligence at Cancer Research UK

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Every day more than 1,000 people in the UK are diagnosed with cancer. But how do we know this? And how do we know, at a national level, what treatment people have, what their chances of survival are, and whether this is getting better or worse?

The answer is simple. We know because we have high-quality data about the diagnosis and treatment of cancer.

Recent research shows that just one in three people feel they know either ‘a fair amount’ or ‘a great deal’ about how the NHS uses health data.

And, as we found out recently, the same is true for cancer data.

Cancer data in the UK is world-leading. Each of the four UK nations has a cancer registry, which the NHS and researchers use to plan cancer services and monitor how well they are diagnosing and treating patients. For example, the information is used to help plan how many radiotherapy machines to build and where they should go, and to investigate how many people are being diagnosed as an emergency, or what happens to people after their cancer treatment has ended.

The cancer registry allows the number of cases of each type of cancer to be tracked over time. This helps researchers investigate possible causes of cancer — such as whether there is a link between cancer and exposure to mobile phones or power lines.

Finally, the data can contribute to patients’ care, enabling clinical geneticists to check if a patient’s relatives also had cancer and adjust their treatment accordingly. And, if new information emerges about long-term effects of treatment, the cancer registry holds the data on who had this treatment. This means they can be contacted, so that they can get further support.

Research commissioned by Cancer Research UK and Macmillan Cancer Support shows that most people with cancer — around 9 in 10 of those surveyed — support the use of cancer data for ends like these. But they want to know what their data is being used for, who can access their information, how it is kept safe and secure and what details are kept. They also want to know about benefits and risks.

When someone is diagnosed with cancer they need to be told about this and the choices they have regarding their personal data. So what’s the best way to make sure this happens?

We heard from patients that health professionals caring for people with cancer are best placed to talk about the use of data and answer basic questions about it. As a simple first step, hospitals should ensure that existing patient information leaflets about cancer registration are available for staff to use and on prominent display to patients.

So that this doesn’t just rest on the shoulders of busy NHS staff, we’re looking into other ways to make sure patients are as informed and reassured as possible about what happens to the information about their cancer.

This data has been at the heart of progress in cancer in the UK. And we know that in order to reach our ambitious goals of improving care and survival, information like this is crucial.

The challenge now is making sure everyone knows about it.

 

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