This study explores how patient-centredness is understood and applied in research and innovation (R&I) across the European Union. Drawing on case studies from Germany, the Netherlands, and Belgium, and insights from a range of stakeholders, it aims to inform future policy and practice. While patient-centredness is gaining prominence at the EU level, its implementation remains variable across Member States and funding instruments. Overall, the findings highlight both the recognised value of patient involvement in enhancing research relevance and the need for more coherent structures, definitions, and approaches to support its consistent uptake. This document was provided by the Policy Department for Transformation, Innovation and Health at the request of the Committee on Public Health (SANT).
More information and full publication
Snippet of the study involving HIRUZ – PAWO:
The Patient Advisory Board for Scientific Research (PAWO), established in 2020 at the Health Innovation and Research Institute (HIRUZ) of Ghent University Hospital (UZ Gent), was among the first permanent structures in Belgium dedicated specifically to integrating patient perspectives across scientific research rather than project-specific consultation.
PAWO functions as a standing advisory body supporting researchers across disciplines by mobilising the experiential knowledge of patients, relatives, and caregivers. PAWO members contribute to protocol development, funding applications, and patient-facing materials, and may be involved at any stage of research, including pre-clinical phases, with earlier involvement increasingly encouraged over time. Inspired by research practices in the UK and the Netherlands, the initiative was introduced in Belgium by the former head of HIRUZ. Since then, similar patient advisory structures have been established at UZ Brussels and UZ Antwerp.
The PAWO model illustrates the evolution of patient involvement in Belgium from ad hoc consultation towards more structured, consistent engagement, although remaining advisory in nature. Patient feedback is operationalised through written recommendations, online focus group discussions, and inperson meetings held several times a year, with particular emphasis on assessing feasibility, clarity of communication, patient relevance, and expected added value of research. PAWO does not provide formal training on scientific research to its members, reflecting an explicit choice to preserve the perspective of the “average patient”. The PAWO Symposium from December 2025 highlighted that patient involvement through the advisory board increasingly occurs at earlier stages of research, including pre-clinical and protocol development phases.
Patient involvement is a key pillar of research at UZ Gent. Proposals are strongly advised to pass through PAWO review, with an emphasis on demonstrating active engagement that influences research objectives. In this modern framework, genuine collaboration is valued over the traditional submission of letters of support.