Initiatives
Thought-leadership, innovation & collaboration in Real-World Evidence based decision making in healthcare
Recommendations
- Emphasise strategic design considerations for crafting registries for Health Technology Assessment (HTA) excellence and underscore the importance of early engagement with diverse stakeholders for improved decision-making in healthcare interventions
- Prioritise data source agnosticism, good data provenance, and effective governance. Engage patients and clinicians in dataset design to ensure relevance and fitness for purpose
- Promote widespread understanding of registry data as valuable evidence for health outcomes and healthcare decisions
- Utilise registries for historical data collection, ensuring meaningful insights into treatment effectiveness and facilitating regulatory and reimbursement decisions
- Facilitate multi-stakeholder collaborations to address challenges related to data quality, implementation, and ethical considerations
- Address perceptions and misconceptions regarding registry data utilisation
- Champion the adoption of international guidelines and standards, leveraging comprehensive frameworks, to ensure transparent and globally aligned regulatory and HTA decision-making
- Identify challenges and provide support towards implementing and adhering to standards
- Support early investment in patient registries and their development to address evidence gaps in healthcare, and advocate for incentives to streamline data collection processes
- Recognise the dynamic nature of registry implementation and address challenges related to data quality, consent for secondary data use, and ensure adaptability to evolving healthcare landscapes
We had participation from 27 members from academia, HTA bodies, industry, patient organisations and regulatory bodies
