FedN: A Federated North

Context The UK population’s health data held in our electronic medical records contains a huge wealth of information that researchers could use to understand the causes of, and better ways to prevent and treat, ill health. To date such research has been difficult because of the huge number of records and the fact that medical data are often held separately across GP surgeries and hospitals. To support health data research, the NHS is creating a network of 11 regional data hubs across England to handle patient data safely and securely. Having just one national data hub isn't practical due to the large amount and variety of data, as well as the different ways it's used in local communities. The Challenge Regional data hubs are a huge step forward, but for some analyses we need to use records from multiple regions. This means that we need new methods to analyse this data across the regional hubs without physically moving or sharing patient data between regions. Aims and Objectives In the Federated North project we aim to change how NHS patient data is used in research, by introducing our free software, DataSHIELD, to the new data hubs in the North of England. DataSHIELD allows data to be analysed without moving, sharing or viewing it, respecting patient privacy, but it needs modifying and extending to work across the new NHS data networks. Federated North will improve health data analysis by: Modifying DataSHIELD to work with the computer systems in the new NHS network, as well as those being developed by our research partners in Germany and the USA. This will contribute to secure and collaborative health research both nationally and internationally. Advancing the software built into DataSHIELD by: providing users with a dashboard describing whether analysis outputs are “safe” and containing no identifiable information about a patient; enabling DataSHIELD to deliver results in real time and to work well with other data analysis tools. Enhancing DataSHIELD's privacy methods to align with new guidelines. Embedding this into DataSHIELD analysis will log how the software achieves safe analysis outputs that respect individual patient privacy, increasing transparency and public trust in the approach. Engaging a diverse stakeholder group, including public members, to design and develop the project. This will ensure that DataSHIELD technology is socially appropriate and supports the responsible use of patient data in research. Balancing these aspects is crucial for integrating scientific and technological advances into society. Applications and Benefits This programme of work will help researchers to perform real-time, privacy-preserving analyses within the SDE network, improving the reproducibility and transparency of their work. It will give researchers the power to analyse health data to address questions such as who is at most risk of ill health, and which treatments are most effective for particular sections of the population. By enabling researchers to analyse data from multiple hubs at the same time, they will get better, more representative, results. Data hubs will be able to demonstrate that their DataSHIELD analyses aligns with guidance governing the safe access to sensitive health data, helping to manage risks and transparency relating to data use. The results from Federated North will be useful for health and population research both nationally and internationally, wherever data from multiple locations needs to be analysed without compromising patient privacy.