Date and time: Sunday, 30.06.2024, 12:15-12:45

Location: Scientific Theatre

The session will introduce the audience to the European Brain Council (EBC) and its activities on health services research and the value of education, digital care pathways for rare brain diseases.

The opportunities offered by data and digital health are multiplying. While barriers remain to unlocking their full potential, we are at an unprecedented moment of change. The European Health Data Space and the AI Act hold the promise of shaping a digital ecosystem that can accelerate the shift towards patient-centred, outcomes-focused, and sustainable healthcare in Europe, and improve patient safety and reduce avoidable harm. Patient care is undergoing a significant transformation, and three key factors – data, patient education and inclusivity – are at the forefront of this change. To gain a deeper understanding of these trends, we examined both patient and provider views. These insights offer a glimpse into the future of patient care. Digital Care Pathways for Rare Brain Diseases research project (2023-2024) – The Case of Phenylketonuria is coordinated by the European Brain Council. The Covid-19 pandemic accelerated the healthcare sector’s digital transformation agenda. The delivery of telemedicine services instead of many face-to-face procedures has been expanded and many healthcare services shifted online remotely. The study is looking at the unmet needs of patients related to information, education and communication in the management and monitoring of Phenylketonuria (PKU) along the digital care pathways. We collected data from patients and caregivers in Ireland, Germany and Spain using a patient survey that was co-designed with PKU patient associations, to gather information about where and how can digital tools support PKU diagnosis, treatment and follow-up. While looking at the patient perspective, the clinician perspective is equally important. This project examines further what is the current state of digital transformation within healthcare systems and how to address the fundamental challenges that hinder the acceleration of the data-driven revolution.

Lecture Title: European Brain Council: Value of education, digital care pathways for rare brain diseases.

Vinciane Quoidbach is Research Project Manager – Public Health and Policy for the Value of Treatment for Brain Disorders Study at the European Brain Council. Vinciane holds a Master Degree in Hospital and Healthcare Management from Solvay Brussels School of Economics and Management and a Postgraduate Diploma in Public Health Management from Manchester Business School. She also holds a Master Degree in Political Sciences and European Studies from University of Antwerp. Prior to this position, Vinciane worked in both public and private sector, at national and international level. She served the Belgian Federal Public Service Health, and the Federal Minister of Health Cabinet as Advisor in charge of public health policy and regulations development in the area of Cancer, Chronic Diseases and Rare Diseases as well as the Biopharmaceutical Company AbbVie as Health Initiatives Manager.

Lecture Title: Can digital tools support care pathways for rare brain diseases? The case of Phenylketonuria

Bernadette Sheehan Gilroy is a Lecturer at Munster Technological University (MTU) Ireland, a PKU Researcher, Advocate and a graduate of the IPPOSI Patient Education Programme. Bernadette recently delivered a TEDx Talk on “The Empowering Role of Advocacy – A Parent’s Perspective” to broaden understanding and compassion around PKU. She is a MTU representative on the All Ireland Rare Disease Interdisciplinary Research Network. She has spoken at Irish and European Parliamentary events, co-led the development of a care pathway for PKU, and has been a PKU patient representative in the Health Technology Assessment process for access to medicines with the National Centre for Pharmacoeconomics. She has been involved in many campaigns to raise awareness of the unmet needs and significant challenges of the PKU and Rare Disease communities to improve patient and family experience. PKU, is a rare neurometabolic disorder that affects a person’s ability to metabolise protein and if left untreated can lead to devastating neurological complications.