Minister Simon Harris Launches Empower; Data Governance Programme
The Empower programme ‘opens the door of opportunity’ for FutureNeuro to drive innovation in health-care while safe-guarding the interests of patients and their data.
FutureNeuro, the SFI research centre for chronic and rare neurological disease, hosted by RCSI University of Medicine and Health Sciences, have co-created and launched the Empower Data Governance Programme. This new academic-industry research initiative is designed to drive innovations in the real-world application of data-driven solutions while keeping data governance at its centre. Empower will harness the collective research capabilities across four participating SFI Centres – FutureNeuro, ADAPT, Insight and Lero (programme lead). The programme will address many different types of data ecosystems, with health data being the prime focus of FutureNeuro.
Leading FutureNeuro industry projects to address the safe secondary use of patient data are clinical and academic researchers Prof Colin Doherty (TCD and St James Hospital), Dr Pamela Hussey (DCU) and Prof Kathleen Bennett (RCSI). Collectively they bring expertise in clinical neurology and care delivery, population health and health informatics standards to the Empower programme.
The vision for Empower is to develop a global data ecosystem that will effectively govern the vast amounts of data that move among actors within complex global information supply chains. The research will advance an alignment between business goals and societal needs to develop methodologies and tools addressing challenges around key areas such as reliability/reproducibility, privacy, provenance, consent, explainability, inclusiveness and avoidance of unfair bias.
‘This programme opens the door of opportunity to apply data analytics ethically to health records, to identify new treatment pathways, shorter route to diagnostics, patient centered integrated care and improved patient-care pathways. Our focus will be on the processes and tools that manage the intersection between data-driven innovation for health and the regulatory environment to protect citizens while maximising the value of “Big Data” assets.’ said Prof Colin Doherty.
‘Empower is an ideal opportunity for FutureNeuro to work closely with the other three SFI Centres –to apply their analytics skills to maximising the research and health-care value of the very large health data sets which are generated in the day-to-day delivery of healthcare services.’ added Business Development Manager and FutureNeuro Centre Manager Bridget Doyle.
Empower was launched by Minister for Further and Higher Education, Research, Innovation and Science, Simon Harris TD on Tuesday Nov 2nd. Speaking at the launch, FutureNeuro Director Professor David Henshall said ‘As a health research centre, we welcome Empower as a national forum to create a community of interest of healthcare consumers, practitioners, policy-makers and managers, academic researchers, industry partners and data protection regulators to facilitate collaborative, transparent and citizen-centric opportunities for the safe and ethical use of health data.’