The Use of Real-Time Data and Open Standards for Cancer Care during the COVID-19 Pandemic

The COVID-19 pandemic has caused issues and challenges in treating all diseases and conditions, including cancer. To assess the negative impact of the pandemic on cancer care and provide data for a further response, the UCL Institute of Health Informatics and DATA-CAN, the Health Data Research Hub for Cancer, set-up a real-time data network to collect and analyse data from NHS cancer centres in 2020.

The partners in the project were able to detect disruptions because of the pandemic in the UK to cancer services across their pathways. They observed diagnostic delays, a decline in referrals, significant impacts on treatments, and disruptions to cancer research. The project confirmed the need for real-time data and open standards, such as openEHR, and clinical terminologies to tackle the significant healthcare challenges such as cancer care.

The findings of this digital initiative were published in a joint paper by the UCL Institute of Health Informatics and DATA-CAN in November 2020. The study showed significant diagnostic and treatment delays as a result of the COVID-19 pandemic. During the initial lockdown (March-May 2020) there was a 70% decrease in urgent referrals for cancer, and a 40% decrease in chemotherapy attendance. Based on these findings, the researchers estimated that the COVID-19 pandemic could directly and indirectly cause thousands of additional deaths in cancer patients – between 7,165 and 17,910.[1]

This data was helpful for the NHS UK to better understand the impact of COVID-19 on cancer services, and allow it to respond so that cancer patients could receive timely care. Professor Mark Lawler, DATA-CAN’s Scientific Lead, said, “Our work has been critical in highlighting the adverse impact of COVID-19 on cancer services and cancer patients. The cancer intelligence that we generated contributed to the restoration of cancer services in the UK. The work has also had pan-European impact, underpinning the 7-Point Plan of the European Cancer Organisation to mitigate the impact of COVID-19 on cancer across Europe. We need to ensure that cancer does not become the forgotten ‘C’ in the fight against COVID-19.”[1]

If you would like to know more about the project, you can watch a recording of a presentation titled COVID and Cancer – The Use of Real-time Data and Open Standards by Monica Jones, Chief Data Officer for the HDRUK Data Research Hub for Cancer – DATA-CAN at the openEHR 2020 Digital Event: DATA FOR LIFE. She also spoke about the need for linked, longitudinal records, and shared care records which would help to achieve safe and effective care, as well as service and quality improvement. Her presentation was a part of a session titled Healthcare Needs from IT, which also featured:

• If “it is all about the data”, what about the people? by Professor George Crooks, CEO at DHI Scotland. Professor Crooks presented the opportunities that the next generation of digital services could bring to the delivery of health and care across the world with a focus on the citizen at the centre.
• Clinical Standards Interoperability and the Single Source of Truth by John Meredith, Lead Technical Design Architect at NHS Wales Informatics Service. He presented the adoption of openEHR to support a “single source of truth” component for use with national applications.
• COVID-19 Rapid Response: A Data Platform Approach by Mark Hunt, IT Development Manager at Somerset NHS Foundation Trust. He presented the way in which Somerset NHS Foundation Trust has rapidly created, tailored, deployed, and improved the digital forms that integrate into its wider IT estate in less than three weeks.

1: Estimated impact of the COVID-19 pandemic on cancer services and excess deaths of people with cancer, accessed 10 February 2021 at: https://www.data-can.org.uk/latest/estimated-impact-of-the-covid-19-pandemic-on-cancer-services-and-excess-deaths-of-people-with-cancer-published-on-bmj-open