For 25 years Jem Collins has been plugging away behind the scenes on a programme that’s revolutionising the way we understand cancer.
Collins leads a team of about 70 analysts as part of Public Health England’s National Cancer Registration and Analysis Service. The registration service is the largest clinical high-resolution dataset anywhere in the world – but still few people actually know it exists, or what it means.
“We collect data on half a million cancers a year,” says Collins. “We are building systems that pull data out of the NHS systems and join them in the cancer registration service. We have 250 staff scattered across eight regional officers, sitting there behind the scenes improving the data quality – and all of this change has been done with no extra resource and 30% budget cuts.
“No one’s ever heard of this one, and yet it's hugely successful.”
To put it simply, Collins’ job is to collect patient data on everyone within a certain range of diseases from across the UK population. The data doesn’t just support public health and research, it is used by the NHS to assess quality of care for patients, for example. The National Institute for Health and Care Excellence uses the data for evaluating new cancer medications, and it’s also picked up by a range of other organisations.
“One in two of us are going to get cancer in our lifetime. Although that means a lot of cases of cancer, it's essentially a different disease in us all, and we're increasingly understanding that at a molecular level,” Collins says. “The real challenge for medicine now is how do I treat the patient sitting in front of me. It's not about a trial, it's not about understanding the textbooks, the statistics – it's how do I find the other dozen patients who are like this person sitting in front of me with breast cancer, with the same molecular abnormalities, the same risk factors, the same treatment profile.”
Collins says he has built the system that will do that. In time, it will be able to form predictive analytics from the data on, for example, when you’ll relapse or what your quality of life will be.
This was a personal project for Collins. He has a medical background, and felt this is “what healthcare needs”. He says it’s a Pac-Man-like experience – just “munching your way through the system, eating more and more hospitals. We went from 2.5 million [patients] in East Anglia to covering 5.6 million”.
As 2016 winners of the Civil Service Awards’ analysis and evidence category, it was great to get recognition, Collins says. But ultimately, “this isn’t about me, it’s about the change of the NHS, and giving back. I’m there to change the healthcare of the population.
“The public sector can do extraordinary things. There are lots of constraints, and it's not about breaking rules, but it is about being very aware of what you can do successfully and how.”
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