System change in practice: A report from the EHC Think Tank workstreams on Access Equity and Future Care Pathways

Abstract

Introduction The European Haemophilia Consortium (EHC) Think Tank was established as a platform for system change to ensure the healthcare ecosystem remains effective and relevant for people with bleeding disorders and other rare diseases. Operating alongside traditional advocacy initiatives, it comprised a series of thematic workstreams in which multiple stakeholders explored and co-designed potential solutions for specific aspects of the healthcare system. This final report from the workstreams on Access Equity and Future Care Pathways summarises recommendations for system change and the actions needed to achieve critical goals. Methodology/Process In a three-phase Discovery-Strategy-Innovation process, workstream participants explored vital challenges to the system in which they were working, mapped the system to identify enablers and constraints to progress, and determined leverage points to explore strategies for change before co-creating a set of recommendations for action. Results Participants in the Access Equity workstream identified a need for evidence-based narratives to drive policy change by effectively reaching and engaging target audiences. Fostering trust among stakeholders, supported by ‘open, active listening’, was seen as essential for progress towards access equity, as was promoting value-based frameworks by ensuring that decision-makers understand the broader impact of progress in access equity for health improvement. Participants in the Future Care Pathways workstream focused on digitalisation, patient preferences and financial incentives as drivers of progress towards creating seamless, personalised care pathways that can be measured effectively. Recommendations included fostering a coordination mindset and culture, encouraging patients to take ownership of their digital healthcare records, and enabling personalised care plans through flexibility in care pathways. Conclusions Among the co-created, innovative strategies and recommendations proposed by workstream participants, key elements to support system change in Access Equity and Future Care Pathways, respectively, include demonstrating value through evidence-based narratives and integrating digital technology into care pathways to enhance patient-centred care. Appropriate capacity-building for all stakeholders, particularly healthcare professionals (HCPs) and patients, will be essential for the success of these initiatives.