HELICAL

HEalth data LInkage for ClinicAL benefit was an MSCA innovative training network that comprised 17 academic and 9 non-academic/industry partners for early-stage researchers in the field of Healthcare Data Linkage in the machine learning and GDPR era. HELICAL exploited 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. European researchers and patients had made leading contributions to the large genomic, transcriptomic, and clinical datasets from patients with chronic autoimmune diseases. Advances in information science provided unprecedented opportunities for using these datasets to elucidate the complex biology of these disorders and their influence by environmental triggers and to personalise their management.

The exploitation of these opportunities was then limited by a shortage of researchers with the required informatics skills and knowledge of requisite data protection principles. HELICAL addressed this unmet need by developing a trans-sectoral and interdisciplinary program with training in the analysis of large datasets, using autoimmune vasculitis as a paradigm.

The HELICAL training program focused on three complementary areas: the application of informatics to large datasets to gain new biological insights; the translation of biological insights into practical clinical outputs; and the identification of the novel ethical constraints imposed on such studies, along with the development of strategies to manage them. In terms of patient care, HELICAL researchers fostered a precision medicine approach in vasculitis by developing tools that could identify and predict disease flares, inform clinicians about opportunities to increase or discontinue immunosuppressive medication and identify therapeutic strategies that target relevant components of the immune system and blood vessel wall, while leaving intact the ability to fight infection and malignancy. The researchers aimed to develop technology that would deliver self-management tools via the patient’s smartphone.

i~HD led a work package specifically on information governance and was responsible for defining the practices and adopting them for data protection and information security, including GDPR compliance. i~HD employed, through the grant, one of the PhD students who was academically registered at the University of Gent and undertook research in data protection and consent for the re-use of data for research when the disease was rare and the data included genetic information.