World Cancer Day – the impact of health data research
World Cancer Day takes place on 4 February every year to raise awareness and educate, to encourage individuals to take action and to support the diagnosis, treatment and prevention of all types of cancer worldwide.
Cancer is a global challenge, with 18 million people diagnosed in 2018 [1] and the primary goal of this international day is to reduce the illness and death caused by cancer by raising awareness of the disease [2].
In England and Wales, 50% of those diagnosed with cancer survive for 10 or more years [3]. This is largely down to extensive health data research and funding worldwide to develop ways to diagnose cancer earlier, to establish new treatment methods, to improve current treatment and to work towards preventing cancer.
The challenges surrounding health data
Data is one of the most important elements to any research. Cancer research is no exception; health data is vital to calculate cancer incidence, mortality, survival and risk and for screening, diagnosis and treatment purposes. This data is crucial to support research across all age groups for all the different types of cancer.
However, despite there being an abundance of data out there, and notably, even though the UK has one of the best cancer registries in the world, this data is not always quick and easy for researchers to find, access and analyse. Across the UK, datasets can be challenging to locate and access, and in some cases, data may be incomplete or of a poor quality [4].
DATA-CAN
The aim of DATA-CAN, the UK’s Health Data Research Hub for Cancer, is to tackle the challenges faced surrounding health data.
DATA-CAN is a unique, UK-wide partnership of six founding organisations including NHS organisations, patients, charities, academia and industry. We have ambitious plans to develop over the next two years and expand our partner organisations as we grow.
Improving the care given to cancer patients and the outcomes for those diagnosed with cancer is at the heart of what we do. By making high-quality health data readily available for cancer researchers to access, this supports them in carrying out their research into new diagnostic tools and treatments for those with cancer.
Health Data Research Innovation Gateway
Through the Health Data Research Innovation Gateway, DATA-CAN is making high-quality datasets available and accessible to cancer researchers. The Gateway is a secure, online portal from which researchers can access anonymised datasets on a wide range of conditions and on a huge number of patients.
The Gateway includes vital information about specific cancers, as well as population groups. For example our dataset on children’s kidney cancers, an area of interest for DATA-CAN’s clinical lead Prof Kathy Pritchard-Jones, contains anonymised data on 670 children with kidney tumours living in the UK and Republic of Ireland. Ensuring that this dataset is more accessible helps researchers and healthcare professional carry out important work to improve the prognosis for children with this type of cancer.
One of the main aims of making these datasets easily attainable is to help researchers in their own work and the provision of new treatments. In turn, this will help to improve patient care not only in the UK, but on a global scale.
Working with patients
Patients continue to be at the forefront of what we do. We work with cancer patients to ensure that the data collected is used in a transparent, responsible way by involving them in our decision-making process. Our aim is to ensure that any data collected can be used in such a way that benefits the NHS, patients and the wider community, whilst also making sure we act in the best interest of all patients.
Real-time data
Alongside the Gateway, DATA-CAN is also dedicated to collecting real-time cancer data from the NHS. This enables hospitals across the UK to compare cancer service trends and understand variation in outcomes. We hope that in the near future we can also offer relevant clinical trials to patients, through the development of trial matching software.
World Cancer Day reminds us of the global challenge that is cancer, the huge impact of health data research on supporting the diagnosis, treatment and prevention of the disease, and how our work at DATA-CAN can help.
References
- Cancer Research UK, World Cancer Day 2021, Accessed December 2020
- World Cancer Day, Accessed December 2020
- Cancer Research UK, Accessed December 2020
- Life Sciences Industrial Strategy, 2017