FutureNeuro, the SFI research centre for chronic and rare neurological disease, has announced collaborative research projects with IQVIA and Novartis Ireland to advance the use of data in healthcare research and, ultimately, the delivery of clinical care.

The DataScape project, in collaboration with IQVIA, and led by FutureNeuro Investigator Prof. Kathleen Bennett at RCSI University of Medicine and Health Sciences, explores the attitudes, expectations and concerns of key stakeholders on the use of health data for healthcare improvement and research, and how to develop a culture of trust that promotes the safe use of health data.

“With Datascape, we aim to address the question of how we can maximise the value of health data to drive innovation in healthcare and services while ensuring that we safeguard the best interests of the patients who own the data and healthcare authorities who are the custodians of the data,” said Prof. Kathleen Bennett, Head of the Data Science Centre at RCSI's School of Population Health.

“We see data-driven innovation driving advances in healthcare. However, it is critical that these innovations are used in ways which align with the needs of patients, whilst retaining trust in the data usage,” commented Gwynne Morley, Country Manager Ireland, IQVIA.

Improving patient care

The Learning Health System in a Digital Hospital (LEGEND) project – co-funded by Novartis Ireland and led jointly by FutureNeuro Investigators Prof. Colin Doherty at Trinity College Dublin (TCD) and Prof. Kathleen Bennett at RCSI – focuses on the development of a prototype learning health system. 

Following ethical approval, the learning health system will integrate patient data from clinical dashboards that come from day-to-day electronic patient record (EPR) use with research analytics. While potentially applicable to many health conditions, LEGEND will benefit from the epilepsy EPR which currently supports research questions in the use of large-scale data analytics to predict treatment outcomes and plan personalised interventions.

“The outputs from LEGEND will be used to define the barriers and facilitators of a data-driven learning health system that will inform the future design of a system that embeds these principles. The ability to interrogate data at scale is vital to inform improvements in individualised patient care and wider population health, ensuring that health resources are used for the maximum benefit of patients,” said Prof. Colin Doherty, Clinical Neurologist, St James's Hospital and Head of School of Medicine, TCD.

“We envisage the potential benefits of this exciting project as delivering real-world evidence which could then be used to support outcome analysis and market access programmes, with the ultimate aim of improving patient care models,” commented Ian Addie, Country Value and Access Head, Novartis Ireland.

A data ecosystem

The DataScape and LEGEND projects are part of EMPOWER, a €10 million academic and industry research programme established by four Science Foundation Ireland research centres (Lero, Insight, ADAPT and FutureNeuro) to drive innovation in data protection internationally and develop a data ecosystem that benefits users while defining and safeguarding the rights of data sharers.

The FutureNeuro Centre, which is funded by Science Foundation Ireland, aims to deliver advances in understanding disease initiation and progress.

With this understanding, and through industry partnerships, new technologies and solutions for the treatment, diagnosis and monitoring of chronic and rare neurological diseases are being developed.