New collaboration between NHS Greater Glasgow and Clyde and Flatiron Health UK to transform real-world cancer data to expand research and improve patient care.
NHS Greater Glasgow and Clyde (NHSGGC), the largest health board in Scotland, has partnered with Flatiron Health UK, a global healthcare technology company, to translate cancer patients' health records into high-quality, research-ready datasets to expand cancer research and improve treatment and care. This is the first partnership of its kind in Scotland, and builds on Flatiron Health UK's established collaborations with NHS organisations in England.
There are around 403,000 new cancer cases in the UK each year, about 1,100 a day, and incidence is rising. Research is one of the ways we improve patient care and outcomes, however, data that can be used in research typically comes only from clinical trials, which represent a small proportion of patients. This leaves gaps in knowledge about how cancer and current treatments affect people and their lives and can deepen health inequalities, particularly for people from communities that are under-represented in health research.
Through this new partnership, Flatiron Health UK will bring together clinicians, epidemiologists, software engineers and data scientists to turn unorganised cancer information, such as clinical letters and reports, into high-quality, non-identifiable datasets that approved researchers and clinicians can use to look for improvements in cancer treatment and care. By learning from a broader and more diverse group of patients, the partnership aims to support more personalised care, identify patients who may benefit from clinical trials more quickly, and improve understanding of outcomes for different groups, helping to address health inequalities and improve equity in care.
The partnership brings together expertise from across NHSGGC, including the West of Scotland Innovation Hub and the NHSGGC Safe Haven, which will play a key role in ensuring data is processed securely and responsibly.
All eligible patients will be contacted directly and given clear information about the partnership and how their data may be used. Patients can opt out from the use of their data at any time, and their decision will always be respected. Any data used through this partnership will only be collected and used for health research purposes that have a direct benefit for patients and the public. It will be transformed into non-identifiable datasets, meaning individuals cannot be identified, and accessed within a secure Trusted Research Environment. Access will be strictly controlled and only approved and verified researchers, including NHS researchers, academic partners and authorised industry health researchers, will be able to apply. NHSGGC researchers and their academic partners will be able to access non-identifiable data free of charge for approved research projects. The partnership has been approved by NHSGGC's Caldicott Guardian and the NHS Health Research Authority, which ensures all relevant legal and ethical standards are met.
NHSGGC and Flatiron Health UK are committed to ongoing engagement with patients throughout the partnership, keeping them informed about how data is being used and how it is contributing to improvements in cancer care. Flatiron's Patient Voices Panel will also help ensure patient perspectives continue to inform decision-making.
Professor Jesse Dawson, NHSGGC Director of Research and Innovation, said:
"This partnership represents an important step forward in how we use data responsibly to improve cancer care for our patients and communities. By working with Flatiron Health UK, through the West of Scotland Innovation Hub and NHSGGC Safe Haven, we are strengthening our ability to turn real-world patient experiences into meaningful insights that can shape better treatments and outcomes in the future."
"Crucially, this work is built on trust. Patients will be fully informed and can decide not to be included. In all cases, data included would be non-identifiable, securely managed and used only for approved research that benefits patients and the public."
"As cancer rates continue to rise, it is vital that we make the most of the knowledge and expertise within our NHS. This collaboration will help ensure we can learn from every patient’s experience, improve equity in care, and support the development of new and more personalised treatments for the future."
Adam Manhi, Country Lead, Flatiron Health UK, said:
"This partnership is the result of careful groundwork on both sides to build a collaboration founded in transparency, strong safeguards and a shared commitment to improving care for patients with cancer.
By unlocking the insights held within real-world data, we can help ensure that people affected by cancer across Greater Glasgow and Clyde benefit from local improvements in research and care. We are privileged to collaborate with NHSGGC in this transformative partnership."
