Data to support the recovery of cancer services

Supporting the recovery of cancer services, and their missing patients, long after COVID-19

Monica Jones is Chief Data Officer for the HDRUK Data Research Hub for Cancer – DATA-CAN and HDR UK North. She is also the Executive Lead for Population Health Management for the Yorkshire and Humber Care Record (YHCR).

Why health and care data matters to me - Monica Jones

"I am a Chief Data Officer - the emergence of which as a senior role in healthcare is indicative of how important data has become. COVID-19 has taken data even higher up the agenda over the last year; as people have clamoured for more information about what is going on and how well we are doing in responding to the pandemic. Even my 82 year old mum (the acid test) knows what the R number means.

"The Yorkshire and Humber Care Record (YHCR) brings together 74 organisations, including 22 acute trusts and 700+ GP practices. These organisations all share patient information so that everyone involved in a person’s care can access the data they need to make the right decisions at the right time. It means that, for example, an oncologist treating a patient for cancer in Leeds can see the same information as their GP in Rotherham, enabling them to work better together. It is really important that this record sharing happens across large regions because people move around, especially when they need specialist care.

"The YHCR stores all patient data across the region in a cloud-based platform which protects sensitive data from access or misuse. It allows healthcare analysts to understand their population’s needs and plan services accordingly. With 5.8 million people covered by the YHCR, modelling using the data gives insights into unique population demographics, preferences and health issues, all of which demand different approaches to how and where care is delivered. As social care organisations start to feed into shared records too, local teams are able to gain a vastly deeper understanding of really important things - such as the impact of using antibiotics and anticholinergic medicines for frail elderly. Through HDRUK we can also give access to approved researchers and securely link our data to other sources of information for them. We can bring together primary care data with hospital activity and cancer registry data to give researchers support with their research, so that they can help us to learn more about cancer.

"We have done a significant amount of engagement with the public in our area to bring them with us on this journey. Public trust is really important if we want to undertake safe and ethical research. We work in partnership with universities, charities and industry organisations like Genomics England, biobanks and pharmaceutical companies to push the boundaries of science to achieve real public good. The speed and efficacy of COVID-19 vaccine development is a perfect example of what is possible when everyone works together to find the answers with access to real time data and is open to learning from each other.

"We will need to keep working together if we want to support the recovery of critical NHS and care services. Our analytics modelling estimated that there could be between 7 to 18,000 excess deaths from cancer in the first year of COVID-19. All due to a range of factors, for example fear of COVID-19 preventing people from attending appointments, people shielding, GP practices reducing services and the similarity between lung cancer symptoms and COVID-19. These have resulted in around 85,000 cancer referrals (at least 1,400 in Leeds alone) not being made over the last year. We need to find and support those people who may need our help. We need to make sure, if there are future waves of the pandemic, that cancer services stay open and that we offer services in locations where people feel safe to come. Over the summer we made excellent use of the empty nightingale hospital in Harrogate as a COVID-free safe-haven for patients to get their chemotherapy or radiotherapy.

"I welcome the change in attitudes and ways of working that COVID-19 has brought to data sharing and we have the opportunity to build on this. We need open standards to drive up the quality and accuracy of the data we collect. This means we can get it right at the start rather than spending our time cleaning and curating poor quality or inconsistent data afterwards. We need all staff to understand their role in this and start to feel the benefits themselves, such as time saved, the impact of interventions evaluated and improved in real time. Clinical champions are very important in bringing the opportunity to life and so we need to support them too. It is our professional, ethical and moral duty to use this data to improve care and we can only do this if everyone plays their part."