We are using data to help patients at front line of NHS cancer care. The Cancer Research UK Edinburgh Centre and the Edinburgh Cancer Centre are working together to use data and information systems in new ways. The Edinburgh Cancer Centre provides comprehensive cancer care for the South East Scotland Cancer Network, serving patients within the 4 regional Health Boards – NHS Lothian, NHS Fife, NHS Dumfries and Galloway and NHS Borders. The Edinburgh Cancer Information Modernisation Programme is enabling improved access to cancer patient data to support service planning, quality improvement and research to improve outcomes for patients. The programme is delivering a world class resource for use in collaboration with national analytical partners, researchers and Scottish Government’s Innovative Healthcare Delivery Programme in association with Health Data Research UK. Research is facilitated by close working with the NHS Lothian Research Safe Haven. The cancer data legacy in Edinburgh Serving a population of 1.4 million, the Edinburgh Cancer Centre has for 40 years maintained a clinical process and outcomes database that integrates with regional electronic health systems and describes the complete cancer journey. This ability to provide a comprehensive description of the clinical pathway and cancer journey is essential for robust HTA. By linking this data with modern prescribing, treatment and diagnostic databases, wider health outcomes, healthcare activity and costs can now be measured in addition to the various necessary clinical outcomes measures. The Edinburgh Cancer Information Modernisation programme is based on an update of this legacy database, using it as the foundation for a fully integrated system. What is Cancer Informatics? Information technology plays a key role in fighting cancer through a growing field called cancer informatics. Cancer informatics is where information science, computer science and health care intersect. It’s about acquiring, storing and using information about cancer most thoroughly and efficiently. Its tools include computers, clinical guidelines, and information and communication systems. It uses information about patient physical, psychological and social characteristics (‘phenotype’) and their molecular characteristics (‘genotype’). These characteristics are studied in relation to how patients interact with the health system and how patients are affected (‘outcomes’). A key feature is the synthesizing of data about cancer in ways such as analyzing captured data, gathering evidence from clinical trials, applying information into clinical practice, evaluating outcomes of changes in clinical practice, and generating new hypotheses for investigation. The Edinburgh Cancer Informatics Programme is striving to use methods in cancer informatics to implement a “rapid-learning system for cancer care.” The “rapid-learning’ comes from the healthcare system being able to keep itself constantly informed on how it is affecting the patients it cares for. Cancer Informatics is a broad field, getting deeper and more complex as medical research and information technology progress. The field is all about collaboration, not just among physicians and researchers but between doctors and health IT professionals and patients and the public. More information can be found on Edinburgh Cancer Informatics website: https://cancer-data.ecrc.ed.ac.uk/ This article was published on 2024-09-23
