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 securelyaccessible for research aimed at improving cancer outcomes.
The partnership brings together DATA-CAN’s national network of academic, clinical andindustryresearchers and its expertise in oncology data curation with the WM SDE’s ability to providesecure 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 twoorganisationswill enable approved researchers to access andanalysecurated 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,accessandanalyse. This partnership will make high-quality health data more accessible for cancer researchers and health professionals in the NHS,universitiesand the life sciences sector, allowing them to understand more about cancer so that new treatments and medicines can be developed.
is hosted by ĢtvƵ and works in partnership with Health Data Research UK (HDR UK), the UK’s national institute for health data science. The , hosted by University Hospitals Birmingham NHS Foundation Trust, is part of the NHS Research Secure Data Environment Network,establishedtoenablethe secure, trusted use of NHS data to support research and innovation.Pseudonymisedpatient datadrawn from hospital patient records,at major cancercentresacross all fourUK nations,coversdiagnosis, treatments including surgery, radiotherapy and chemotherapy, testresultsand patient outcomes.
All data accessoperatesto the highest standards of information governance,privacyand 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 appliedin accordance withnational policy before data is made available for research.
The first dataset,has already been uploaded tothe WMSDE, with three further datasets in preparation. As the resource grows, it will offer value at every level: cancercentresthat 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 singlecentrecould 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 commitmentofputting the patient voice at the heart ofit 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 itsinception,the publiccontinue to be represented atboard andmanagement level, ensuring that patient perspectivesremaincentral to the governance and ongoingoperationof theresource.
Professor Geoff Hall, Clinical Lead and Hub Director of DATA-CAN and Chief Clinical Information Officer at ĢtvƵ, said:
“This partnership with the West Midlands Secure Data Environment isan important stepin building a national resource ofhigh-qualitycancer data that researchers can access securely. By working across regions andorganisations, we can better support research that delivers meaningful benefits for cancerpatients.”
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 ĢtvƵ. The West Midlands Secure Data Environment allows safe, trusted access to health data, and this partnershipdemonstrateshow 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 researchexpertisewith the secure infrastructure provided by the West Midlands SDE, we can accelerate high-impactresearch and innovation whilemaintainingpublic trust.”
Libby Cooper, Chair of DATA-CAN’s Patient and Public Involvement and Engagement (PPIE) Group, said:
“Working across NHSorganisationsto 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.”