DATA-CAN, the UK’s Health Data Research Hub for Cancer, and the West Midlands Secure Data Environment (WM SDE) have announced a partnership to strengthen the UK-wide resource of high quality, curated oncology data, making it securely accessible for research aimed at improving cancer outcomes.
The partnership brings together DATA-CAN’s national network of academic, clinical and industry researchers and its expertise in oncology data curation with the WM SDE’s ability to provide secure access to patient health data that remains under NHS control at all times, enabling approved researchers to generate insights that improve patient care while protecting patient confidentiality. Together, the two organisations will enable approved researchers to access and analyse curated cancer datasets safely, responsibly, and in ways that align with patient expectations.
One in two people will develop cancer during their lifetime. Information about a patient’s health and care is collected and generated, but this data is not always easy for researchers to find, access and analyse. This partnership will make high-quality health data more accessible for cancer researchers and health professionals in the NHS, universities and the life sciences sector, allowing them to understand more about cancer so that new treatments and medicines can be developed.
DATA-CAN is hosted by Leeds Teaching Hospitals NHS Trust and works in partnership with Health Data Research UK (HDR UK), the UK’s national institute for health data science. The WM SDE, hosted by University Hospitals Birmingham NHS Foundation Trust, is part of the NHS Research Secure Data Environment Network, established to enable the secure, trusted use of NHS data to support research and innovation. Pseudonymised patient data drawn from hospital patient records, at major cancer centres across all four UK nations, covers diagnosis, treatments including surgery, radiotherapy and chemotherapy, test results and patient outcomes.
All data access operates to the highest standards of information governance, privacy and data security. The collaboration uses pseudonymised patient data within secure Trusted Research Environments. Patients who do not wish their confidential patient information to be used for research and planning can register a National Data Opt-out. Where applicable, the National Data Opt-out is applied in accordance with national policy before data is made available for research.
The first dataset, has already been uploaded to the WM SDE, with three further datasets in preparation. As the resource grows, it will offer value at every level: cancer centres that contribute data gain access to their own curated datasets, researchers gain a single secure route into oncology data from across the UK, and national research studies gain the scale and quality of data needed to answer questions no single centre could address alone.
This makes the partnership an important contribution to UK life sciences, supporting research across the cancer pathway, from diagnosis and treatment through to improving outcomes and service delivery, and strengthening the UK’s position as a destination for world-class cancer research.
In line with DATA-CAN’s commitment of putting the patient voice at the heart of it does, members of the Patient and Public Involvement and Engagement (PPIE) Group have been involved throughout the development of this partnership, contributing to the assessment of partnership opportunities and helping to shape the collaboration. As key members of the DATA-CAN team since its inception, the public continue to be represented at board and management level, ensuring that patient perspectives remain central to the governance and ongoing operation of the resource.
Professor Geoff Hall, Clinical Lead and Hub Director of DATA-CAN and Chief Clinical Information Officer at Leeds Teaching Hospitals NHS Trust, said:
“This partnership with the West Midlands Secure Data Environment is an important step in building a national resource of high-quality cancer data that researchers can access securely. By working across regions and organisations, we can better support research that delivers meaningful benefits for cancer patients.”
Professor Simon Ball, West Midlands Secure Data Environment Senior Responsible Officer, Chair of the Executive Board and a consultant nephrologist at University Hospitals Birmingham, said:
“We are pleased to collaborate with DATA-CAN and Leeds Teaching Hospitals NHS Trust. The West Midlands Secure Data Environment allows safe, trusted access to health data, and this partnership demonstrates how regional and national initiatives can work together to advance cancer research in the UK.”
Professor Mark Lawler, Professor of Digital Health at Queen’s University Belfast and Scientific Director of DATA-CAN, added:
“Collaboration is essential if we are to unlock the full potential of real-world cancer data. By aligning DATA-CAN’s clinical and research expertise with the secure infrastructure provided by the West Midlands SDE, we can accelerate high-impact research and innovation while maintaining public trust.”
Libby Cooper, Chair of DATA-CAN’s Patient and Public Involvement and Engagement (PPIE) Group, said:
“Working across NHS organisations to use data securely and responsibly is good news for patients. It helps ensure that research using health data leads to better understanding, faster diagnosis and improved treatments for people affected by cancer.”