Title: DATA-CAN - The Health Data Research Hub for Cancer
Funder: Medical Research Council

Abstract: "Purpose: To create a National Cancer Digital Innovation Hub (DATA-CAN), a sustainable social enterprise underpinned by collective digital/data science strengths across the UK. DATA-CAN will enhance collection, curation, access, analysis and interpretation of cancer data, while providing guidance, domain-specific expertise and technical support to clinicians, academics and commercial partners. Data custodians NHS: Teaching hospitals in London, Yorkshire, Wales, NI and Scotland Academic/Clinical: HDR-UK centres in London, Wales/NI and Scotland, UCLP, UoL & Sheffield, QUB; Local Health Clinical Record Exemplars (LHCREs): London, Yorkshire and Humber Industry: IQVIA Area of focus Theme 1: Enable and expand UK-wide cancer datasets (Lead: HDR Wales-NI) Theme 2: Provide high-quality real-world data to support health and care transformation (Lead: UCLP) Theme 3: Use real-world data to support trial design and delivery (Lead: Yorkshire and Humber) Supported by Enabler 1: Patient and Public Involvement/Engagement Enabler 2: A sustainable business model Data provision: Initial data assets encompass disease-specific datasets (colorectal cancer, paediatric malignancy); linked datasets from primary, secondary, and tertiary care; and IQVIA’s ODN, providing real-time clinical analytics and clinical trial matching services. All have been selected as mature programmes with existing ethics approval in place, allowing immediate access.Further datasets have been identified and will be added to DATA-CAN over the next 18-36 months, including new datasets from two national LHCREs, new data types including digital pathology, imaging, and data made available by three national centres for doctoral training in healthcare. The ODN will expand to at least 20 NHS Trusts. DATA-CAN Expert Data Services: DATA-CAN will offer: Dataset optimisation: data custodians advice on data availability/suitability for research, data curation and linkage, data enrichment Protocolised research solutions: users support on dataset selection, access, study design and data curation Care insights: real-world data and access to analytic services e.g. cost effectiveness analysis, benchmarking, needs analysis; actionable insight and quality improvement tools to patients/clinicians Trial design and delivery: trial feasibility assessment, synthetic control-arm data and real-time patient identification Additionally, in collaboration with industry partners, we will offer data custodians consultancy services on information governance, data security, access negotiation, and fair value exchange and commercial models. Patient Oversight: Patient oversight is a key DATA-CAN governing principle. We commit to Use MY Data’s principles concerning: openness, transparency, involvement, communication and recognition of the data source (the Patient Data Citation)."


Research activity codes: 4.5 RESOURCES AND INFRASTRUCTURE (DETECTION);5.9 RESOURCES AND INFRASTRUCTURE (TREATMENT DEVELOPMENT);6.9 RESOURCES AND INFRASTRUCTURE (TREATMENT EVALUATION);7.4 RESOURCES AND INFRASTRUCTURE (DISEASE MANAGEMENT)
Health categories: CANCER AND NEOPLASMS