Taking a Patient – Centred Approach to AI in Brain Research

Building Trust in AI

Digital health, also known as the fourth wave of healthcare, places the citizen at the centre of healthcare delivery. However, integrating AI into clinical settings has been slow due to several challenges, including patient safety and privacy concerns, an evolving regulatory landscape, ethical considerations, and issues with the interpretability of AI models. AI isn’t just about technology; it’s about people and processes.

One of the key challenges for AI in healthcare is trust. AI can seem like a “black box,” making decisions that are difficult to interpret. The team at FutureNeuro are tackling this head-on by conducting research to explore attitudes to AI from multiple stakeholder perspectives. Through interviews and focus groups with people from across the neurological community—patients, caregivers, clinicians, allied healthcare professionals and academics—they are gaining a deeper understanding of what it will take to build trust in AI-driven healthcare.

About FutureNeuro

FutureNeuro is the Research Ireland Centre for Translational Brain Sciences, hosted by RCSI University of Medicine and Health Sciences. By partnering with industry, healthcare providers, and patient organisations, FutureNeuro is delivering cutting-edge diagnostics, treatments, and digital health solutions. Within digital health, the Centre prioritises a holistic approach to individual health and well-being, leveraging the potential of artificial intelligence (AI) and diverse data resources to generate new insights that can be translated into clinical practice. The goal? To change the way, we treat and manage brain diseases, making healthcare more personalised, accessible, and proactive.

FutureNeuro embraces a socio-technical, team-based approach—aligning AI development with the needs of patients, clinicians, and the healthcare system. From the very start, data scientists collaborate closely with healthcare professionals, ethicists, and patients to co-design solutions that are both innovative and practical. Public and Patient Involvement (PPI) plays a key role, ensuring that research is done with the public, not just about them. This co-creation ensures that the AI solutions developed meet real-world needs, improving both the delivery of care and patient outcomes.

AI-Enabled Projects: Epilepsy, Mental Health, and Multiple Sclerosis

At the heart of FutureNeuro’s AI strategy is its ability to harness large, rich datasets to improve patient care. A prime example is the Irish National Epilepsy Electronic Patient Record (EPR)—one of the most comprehensive epilepsy datasets in the world, approximately 50,000 person years of data and over 10,000 individual longitudinal patient records. Using this data, FutureNeuro’s multidisciplinary teams are applying machine learning to uncover patterns that may go unnoticed by the human eye—whether that’s predicting progression of disease or helping doctors choose the best treatment plan based on data trends.

In mental health, another project is using AI to help people better understand and manage psychotic experiences, which exist along a continuum in the population. The team is developing app-based tools and psychoeducational interventions to help people make sense of these experiences. Data collected from digital devices, including passive sensor data is used alongside gamified cognitive testing, to detect early warning signs and develop predictive models to support timely intervention.

In multiple sclerosis (MS), researchers are working to discover new digital biomarkers that can alert clinicians to early signs of deterioration, allowing for timely interventions. This involves using digital devices to track a person’s gait and measure subtle eye movements, with the data analysed alongside clinical information to detect early signs of changes in their condition.

Nurturing a Culture of Data Literacy

FutureNeuro is committed to improving modern-day data literacy among researchers. This means training their teams to gather high-quality, diverse data that reflects the real-world conditions of patients. It’s not just about having more data, but about ensuring the data is accurate, complete, and representative of the population. By following emerging regulations like the AI Act and the European Data Governance Act, and aligning with global standards like FAIR data principles, FutureNeuro is setting the stage for ethical, transparent, and effective AI research.

Final Thoughts

With its integrated clinical network and engaged patient community, FutureNeuro serves as a dynamic testbed for developing and evaluating AI-enabled solutions that improve neurological and neuropsychiatric care, all while prioritising patient safety and privacy.

You can find out more here: FutureNeuro