Health data linkage for clinical benefit
European researchers have made leading contributions to the large genomic, transcriptomic and clinical datasets from patients with chronic diseases. Advances in information science provide unprecedented opportunities for using these datasets to elucidate the complex biology of these disorders, its influence by environmental triggers, and to personalise their management. Currently, exploitation of these opportunities is limited by a shortage of researchers with the required informatics skills and knowledge of requisite data protection principles. HELICAL addresses this unmet need by developing a trans-sectoral and interdisciplinary training programme that builds on the expertise and existing collaborations of its partners. It provides 15 early stage researchers with training in analysis of large datasets, using autoimmune vasculitis as a paradigm as it is scalable, and as comprehensive biological and clinical datasets are already available. The HELICAL training program focuses on three complementary areas: application of informatics to such datasets to gain new biological insights; translation of these into practical clinical outputs and management of ethical constraints imposed on such studies. The programme will be delivered through a multidisciplinary, trans-sectoral partnership of Academic and Industry researchers with expertise in basic biomedical research, epidemiology, statistics, machine learning, health data governance and ethics. Therefore, HELICAL exploits recent advances in data science to link research datasets with longitudinal healthcare records, based on the robust ethical foundation required for linkage studies using near-patient data, to address key experimental questions. The results will have obvious potential for transforming healthcare in the field of autoimmune disease. The training provided addresses a key skills gap in the European workforce and should make the ESR eminently employable in academic, industrial and clinical sectors.