On 5-6 December 2023, the third Data Saves Lives Ambassador Training Bootcamp was held in Brussels, Belgium, in partnership with the European Health Data & Evidence Network (EHDEN). The bootcamp centred on the process of establishing community-led patient registries. The ultimate aim was to empower participants with insights into the steps involved and the pivotal role of patient groups in shaping registry design for community benefit.

Digestive Cancers Europe (DiCE) is a non-profit, European umbrella organisation of a large group of international members representing patients with digestive cancers - colorectal, gastric, oesophageal, liver, pancreatic, and rare cancers.

Health data and artificial intelligence (AI) undoubtedly hold a promising future within the realm of technology and research, with the potential to have a substantial impact on patients’ lives.

Madeleine Brady, inflammatory bowel disease (IBD) patient, Engagement Consultant and formerly a comms lead for Health Outcomes Observatory (H2O), presents a personal view on the impact of H2O on patients.

In September 2022 Frontiers in Big Data published the paper “A concentric circles view of health data relations facilitates understanding of sociotechnical challenges for learning health systems and the role of federated data networks”.