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How do we know how many people are diagnosed with cancer each year? Or how long people survive? Or how effective different treatments are?

The answers lie in patient data.

Data is the foundation of what we know about cancer. It tells us what’s working and what needs to change.

But data can be misused, as recent news stories involving Facebook have shown. And while people might not think too much about their data when things are going fine, they rightly care when things go wrong.

Data is vital to the work that we do. Here’s how one of the teams in Cancer Research UK uses it, and how it helps save lives.

What data do we use?

Vast amounts of data are collected about cancer patients. Each time a patient uses the NHS, data such as age, symptoms, prescriptions and treatment choices are collected.

It’s this data that the Cancer Intelligence team, Cancer Research UK’s in-house analysis specialists, uses. We don’t collect data directly from patients, but apply to access information from organisations such as Public Health England. This involves a stringent approval process and strict rules, including never accessing names or addresses of patients.

The data we access is sensitive, such as precise medical histories, age and gender. Because the data is ‘potentially identifiable’, meaning if enough of it was pieced together then it might be possible to work out who certain people are, it needs to be protected.

How do we keep data safe?

For us to use patient data there must be a balance between security and access – making data so secure it can’t be used defeats the point.

There are strict rules about who can see the data, how long we can have it and what we can use it for. We don’t even share it between different teams in Cancer Research UK, and we never publish confidential data when we report results from our projects.

If we don’t follow the rules there are serious legal consequences.

The Cancer Intelligence team has a secure system that keeps data as safe as possible while we have it. When we publish results of our statistical analyses, we make sure that nobody could be re-identified and that we don’t release any confidential information.

The team has worked with data for over 15 years. Recently we became the first part of any cancer research charity to be recognised by NHS Digital as having strong protections in place, meaning we have effective and tight control over the patient data we have.

Keeping confidential patient data secure is our priority. The data we use is vital as it lets us find patterns that tell us how well the health service is working and where it can improve. Here’s a selection of data projects that show how it works.

Bowel screening

Fewer people do the bowel cancer screening test than other national screening programmes. And it’s vital to work out why. Alongside Public Health England, we ran a trial involving a combination of advertising and direct mail, aiming to increase bowel screening uptake. We’re now analysing how effective the campaign was, using age, location, the date when the test kit was received and sent back. You can read more about this here.

Treatment variation

Despite having the same clinical guidelines, different cancer patients across the country are treated differently. We’re working on two projects using patient records, including age, ethnicity and healthcare, to understand why this happens for lung and ovarian cancer in England.

Linking clinical trials and survival data

We want to combine data collected from Cancer Research UK clinical trials with NHS treatment data. Understanding how effective clinical trials have been, how people who have been on trials respond to treatments, and what happens next, will help us understand how effective new drugs are.

How do we continue to improve?

We want patients to tell us their thoughts and concerns, so we’ve set up a group of patients and experts to recommend guidelines, improving how data is used and how we share what we do with the public.

Through this we’ve increased data awareness training for staff, and we’re sharing information on our projects that use sensitive patient data, including case studies.

Using and understanding cancer data is just as important as using and understanding cancer treatments. It has just as much power to save lives, and we’re committed to protecting it.

Richard Welpton is a data liaison manager in the Cancer Research UK Cancer Intelligence team 

Comments

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Zeynep Bengu May 27, 2018

Hi, I had breast cancer history and BRCA-2 gene mutation. My brother and father died because of cancer in 2017.I’m at Edinburgh and I want to share all my health data.