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Monica Jones, Chief Data Officer of the Health Data Research UK hub DATA-CAN, explains why we need good quality data that can be used well.

A changing world 

Since the COVID-19 outbreak regional, national and international population health management needs have accelerated. I have been working hard to address this urgency identifying new data requirements across all aspects of healthcare. Using real time, real world evidence we have a better chance of tackling the enormous challenges that we all face. The team at DATA-CAN – the health data research hub for cancer, were recognised recently by being ‘Highly Commended’ for the Health Data Research UK (HDRUK) Impact of the Year 2020 award with our entry for the ’Model that estimates excess deaths from cancer during COVID’. 

What do researchers need from healthcare data? 

If you had asked me a year ago, I would have given you a slightly different perspective to today but really there’s no difference. Then I was a director in an NHS acute trust in Rotherham dealing with the pressures of frontline healthcare. Barely time to breathe, never mind to do the thinking that I hope to be able to do today. I am now the Chief Data Officer of the HDRUK health data research hub for cancer – DATA-CAN, based at the University at Leeds. Through this role, I am trying to make sure we deliver on our promise of improving research and contributing to potentially saving 30,000 lives. My role in Rotherham was about everyday issues and what did it rely on? Data… my role at the University of Leeds relies on? Data. 

Why cancer? 

Over half of UK citizens will get cancer at some point in their lifetime and while many will be able to live with it, the UK has lower five year survival rates than Europe and we must improve outcomes by using data-driven approaches.  We cannot change approaches or treatment without evidence. The link between smoking and cancer is a good example of where the data has both driven significant changes in behaviour and improved clinical outcomes. Cancer costs the NHS £7bn annually so we need to improve the cost-effectiveness of care, as well as recognising that less common cancers need to be addressed on a national scale.  

DATA-CAN (so called because it is ’data about cancer‘ but also because we believe ‘we can’ improve cancer outcomes) aims to inform better use of current approaches and provide cancer intelligence to help drive innovation. DATA-CAN will inform the development of new diagnostics and novel therapeutics, improve care, and enhance the UK economy. Our vision is to unlock the power of health data to improve cancer care by: 

• making high-quality health data more accessible for cancer researchers, clinicians and other health professionals via the publicly available HDRUK Innovation Gateway 
• connecting data from across the UK and making it easier to find and use, facilitating research into new diagnostics, treatments and improvements in care 
• working with patients, the public and health professionals to ensure that data is used transparently and responsibly, and that the benefits are returned to the NHS and the wider UK community. 

Is it real… why is it different now? 

Over the past two years I have also been the Executive Lead for Population Health Management for the Yorkshire and Humber Care Record (YHCR). This was funded by NHS England to join up the clinical systems across the region to make the patient ‘journey’ better. Everyone involved in a patient’s care can see the patient record to avoid duplicate tests and so they can get diagnosis and treatment quicker. This is now live. We also have a cloud based platform – the YHCR ‘Data Ark’, which is fully GDPR compliant and has de-identified records for analysis to help us understand our population needs. There are close links between DATA–CAN, YHCR and the London healthcare record exemplar – OneLondon – through the founding partners. 

What we need to do is make sure it is usable 

At DATA-CAN we are focusing on the ways in which people are cared for across the whole NHS, from their GP to the hospitals, and when they leave hospital and may need extra care in the community before going home. This ‘whole pathway’ takes a comprehensive view of every service that a patient needs; sadly often these are not linked up, and patients may fall between the gaps and signs may be missed. We need to have a system that spots the warning signs earlier and is joined up.  

So how do we make use of the data that is available to us in health and social care for patients, public and staff …  and beyond? We need to record it in a way that makes sense. It is the duty of everyone in the NHS to keep a true and accurate record for every patient. In the 21st century this should be digital in a proper ‘Electronic Patient Record’ and use clear clinical terminologies. Is that too much to ask? Once that happens things get better. Good quality structured data for direct care happens, good quality data for secondary uses such a population health management happens and, guess what, good quality data for research also happens! 

Visit www.data-can.org.uk to find out more.