Overall conclusions of the analysis and reflections on the data.
Reflections on the data
There are three important considerations when looking at the data
The data collection was conducted during the main year of the COVID-19 pandemic. This provides the opportunity to look into the effect of the pandemic on research spend. However, the exceptional events of 2020 into 2021 means the data would be difficult to compare with other years.
Across several areas the analysis used the NCRI cancer type groupings such as Gastrointestinal, which incorporates several different cancer types. When data is collated into fairly broad cancer type groups, analysis of individual cancers can be inhibited. Therefore NCRI groups were used when it was beneficial to view the broader picture of rare and less common cancers, or when funding allocations divided into individual cancer types were particularly low. In other sections of the report, data was divided more granularly into different cancer types to allow for more detail, and for direct comparison of research spend against different cancer type’s mortality and societal burden.
The analysis looks at government and charity funded research spend only and does not include the large amount of cancer research funded by pharmaceutical companies in the UK.
The incidence of rare and less common cancer is 47% of cancers and currently 55% of cancer deaths. The analysis shows that 54% of site specific research spend is in rare and less common cancers. However, there are over 200 rare and less common cancers sharing this funding, compared to just four common cancers sharing the remaining 46% of site specific research funding.
The comparison also found rare and less common cancers research follows similar investment in research areas to the most common cancers, albeit with a greater focus on Biology and Aetiology, and less funding on Prevention.
The analysis generally indicates an established body of research that is nationwide and embedded into existing research networks. Funding does seem to link with established research infrastructure supported by the UK Government, predominantly the NHIR, with large cancer charities such as Cancer Research UK. Regional patterns of funding show that University College London, and Universities of Oxford and Cambridge – sometimes known as the ‘golden triangle’ – are beneficiaries, as are other city-based Russell Group Universities, notably Newcastle and Birmingham. Having research studies based in an area can benefit local cancer patients by providing easier access to ongoing clinical trials.
From a four nation perspective, there were comparatively low levels of funding in both Northern Ireland and Wales. This may have implications for patients’ access to clinical trials, particularly in Northern Ireland where travel to other parts of the UK would involve a flight or boat journey. Although it is worth mentioning that the data doesn’t show all locations of multi-site trials, only the lead organisation.
The analysis also found the COVID-19 pandemic brought challenges, with the majority of organisations reporting that the pandemic had a negative impact in funding cancer research in the financial year 2020/21. Despite an 8% drop in funding, there has been resilience demonstrated to ensure research mostly continued during the COVID-19 pandemic. The greater proportion of organisations questioned felt the negative impact on research funding would not be enduring.
In all, the analysis indicates that the UK research framework is present to make progress and improve outcomes for those affected by rare and less common cancers.