Background
In March 2020, the COVID-19 pandemic was accompanied by very strong public health messages to stay at home, protect the NHS, save lives. The perception of many people was that GP practices were closed, rather than the reality of being open but doing ‘business’ in a different way.
Anecdotally it appeared that patients were staying away from their GP and had a fear of being referred to a hospital or attending hospital treatment appointments in case they caught COVID-19.
Cancer services were also changing in order to deal with the pandemic and protect cancer patients who, it was felt, may be at high risk from the virus.
But were these anecdotes or the reality and, if reality, were these impacts widespread or just isolated incidents?
The routinely collected data, which would help answer these important questions, was simply not available as the ‘latest’ data was six months old. In other words, the latest data that could be analysed related to September 2019 when the UK was in a much different position. What was vitally and urgently needed was data that was a maximum of two weeks old. This is known as ‘real-time data’.
What did the research find?
Dr Alvina Lai of the UCL Institute for Health Informatics and her team used weekly real-time data collected by DATA-CAN during the pandemic and compared it with data pre-COVID-19. This showed:
- a very significant drop in the urgent referrals (called two week wait) for early cancer diagnosis – on average less than 23 people were now being referred out of every 100 people referred before the pandemic
- a reduction in chemotherapy attendances – on average only four people were now attending for chemotherapy treatment out of every 10 people that had chemotherapy treatment appointments.
In England, the model estimated there could be between 7,165 and 17,910 additional deaths in newly diagnosed cancer patients in a year.
What is the impact on patients?
The results provided evidence of the impact of COVID-19 on cancer services and brought this to the attention of health systems and policy makers.
The research findings were presented to the UK’s four chief medical officers and SAGE committee and contributed to the decision to restore cancer services and prioritise cancer care to minimise any additional deaths in cancer patients.
This research also resulted in media headlines, as well as a national Government campaign to urge people not to hesitate to see their GP if they have worrying symptoms and to highlight the importance of early diagnosis and attending hospital appointments.
DATA-CAN health data scientists continue to use weekly ‘real-time’ data updates to help ensure best outcomes for cancer patients. The research and findings highlighted the importance of sharing and analysing health data, not only now and in the future, to underpin and improve health service delivery to bring benefit to all.
What data was used?
DATA-CAN collected weekly ‘real-time’ data on urgent referrals for early cancer diagnosis and chemotherapy attendances from hospitals in Leeds, London and Northern Ireland – from 2018 to the current date.
This involved over 3.8 million electronic health records in England from primary care data linked to the Office for National Statistics death registrations to model excess deaths at one year in England.
All data used is de-identified data that does not identify an individual patient and so is authorised to be used in research to improve health, care and services planning.
Patient and professional views
Our study highlights the value of bringing together data from a number of place to help researchers, health systems and policy makers improve cancer management for our patients during this pandemic.
Dr Charlie Davie, DATA-CAN Hub Director
The work by DATA-CAN and UCL highlights the importance to cancer patients, and our whole population, of our NHS data being used by data researchers to show the impact of COVID-19. This enables health care professionals and policy makers to take action and make decisions in relation to our care and to cancer services.
Margaret Grayson, DATA-CAN PPIE Group member
Who funded and collaborated on this work?
Health Data Research UK (HDR UK), HDR Wales and Northern Ireland), DATA-CAN, the UCL Institute for Health Informatics and others – see research paper for further details.
Further Information
Download the research paper on BMJ Open here – Estimated impact of the COVID-19 pandemic on cancer services and excess 1-year mortality in people with cancer and multimorbidity: near real-time data on cancer care, cancer deaths and a population-based cohort study
DATA-CAN news story – Deaths in people with cancer could rise by at least 20 per cent