DATA-CAN highlights from the Economist’s World Cancer Series 2021
The Economist World Cancer Series: Europe 2021 brought together cancer experts to discuss the impact of the COVID-19 pandemic, how AI and digital health is aiding drug discovery, diagnosis and treatment and how to engage patients and the public in data-driven cancer care.
Prof Mark Lawler, DATA-CAN’s Scientific Director, Professor of Digital Health at Queen’s University Belfast and Co-Chair of European Cancer Organisation’s Special Network on the Impact of COVID-19 and Cancer, joined Norman Sharpless of the US National Cancer Institute to discuss Lessons from the All-Ireland Cancer Consortium.
Mark highlighted how the All-Ireland Cancer Consortium, established in 1991, is a unique partnership of representatives of Ireland, Northern Ireland and the United States. They worked together to reduce cancer incidence, enhance research and improve cancer care on the island of Ireland which, at the time, had some of the highest cancer rates in Europe. Mark explained how this transatlantic consortium has helped to save thousands of lives by increasing access to the latest treatments, participating in international clinical trials and building up both the quantity and quality of research collaborations.
The session also considered Europe’s Beating Cancer Plan. Mark explains, “You can never be too ambitious when tackling cancer and COVID-19 has extenuated the challenges. We need to be able to deliver innovative therapies and research right across Europe so that all citizens benefit regardless of their country’s wealth.”
He continued, “Through our data research after the first lockdown, we highlighted the challenges that COVID-19 created – including an estimated one million undiagnosed cancer patients in Europe. We are using data to address this challenge and drive policy change. The European Cancer Organisation’s Time to Act campaign is urging governments and health systems to ensure that COVID-19 does not continue to undermine the fight against cancer.”
Chris Carrigan, DATA-CAN’s Patient and Public Involvement and Engagement Lead and Chief Operating Officer, joined an international panel on data and the patient. The session focussed on the need to engage citizens and patients in building data-driven cancer care and asked how a data-rich, data-enabled care environment will impact patients.
Chris gave the UK perspective on patients and health data and explained that, from a patient perspective, there is a disconnect between the data that GPs hold and hospital data. Whilst there are local initiatives to connect data, including Local Health and Care Record projects, such as OneLondon and the Yorkshire and Humber Care Record, there is still a lot of work to do to connect health data across the UK.
Chris added, “Over recent years the complexity and sheer amount of clinical data has increased, but a real issue remains around data quality. We know that better quality and more personalised data can lead to more personalised medicine and better outcomes for patients. This is why it is important that we work to improve the quality and usefulness of health data. This is a key priority for DATA-CAN and the other health data research hubs.”
The session also considered patients concerns about health data. Reflecting on this issue, Chris commented, “Public and patient trust in the use of health data is our biggest challenge. We need to demonstrate that we are acting in a trustworthy manner and give patients a choice about how their data is used and a ‘seat at the table’ when data decisions are being made. If we lose public trust, we may lose access to health data which in turn slows down cancer research into new treatments and diagnostics. Ultimately this costs lives.”
Further information about the Economist World Cancer Series: Europe 2021 can be found here, including an on-demand video of Mark Lawler’s session.
Read more about DATA-CAN’s work on cancer and COVID-19 and how we work with patients and the public.