Digital data is driving research and empowering patients

Digital health systems, in particular the use of data, are enabling better diagnosis, treatment and management of neurological disease.

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The traditional medical model has been that patients visit a doctor when unwell. The doctor offers treatment options, which can include behavioural solutions, some of which patients would comply with.

However, in 2007, with the birth of electronic records, the Institute of Medicine in the USA suggested a new approach – called a learning health system. It automatically aggregates digital information which doctors collect from thousands of patients in real time and allows rapid learning from data to persuade people to change behaviour.

This dynamic system could improve neurological care, says Professor Colin Doherty, Professor of Epileptology, Trinity College Dublin and Principle Investigator for Digital Health at FutureNeuro – a Science Foundation of Ireland Research Centre for chronic and rare neurological disease. It is hosted by RCSI University of Medicine and Health Sciences with over 80 multidisciplinary researchers across seven leading Irish universities.

Moving to new research models

FutureNeuro is embracing research into the learning health model to improve patient outcomes. The Centre’s mission is to enable people with neurological disease to live fulfilled lives. Its scientists and academic clinicians conduct advanced, impactful research in epilepsy, motor neurone disease, MS, Parkinson’s and other chronic and rare neurological diseases.

By adopting a data science approach, researchers can discern patterns in disease, which can help to unlock future treatments.

The team works in partnership with national and international companies to identify faster diagnostics, personalised treatments and patient-centred care. For the latter, collaborative research with industry and other SFI Centres explores the power of innovative data analysis when applied to the wealth of patient data. FutureNeuro applies a rigorous approach to safe governance of data and is pioneering patient-engaged and patient informed models of research.

Effective use of data

Professor Doherty believes that by adopting a data science approach, researchers can discern patterns in disease, which can help to unlock future treatments. For epilepsy, the clinical network has gathered valuable data for over 10,000 Irish patients out of 40,000 people living with the condition here.

The more effective use of data will also help clinics to run more efficiently and facilitate people with epilepsy and other neurological diseases to take control of the day-to-day management of their disease.