Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Access Equity and Future Care Pathways

Abstract

Abstract Introduction The second series of workshops for the EHC Think Tank Workstreams on Access Equity and Future Care Pathways involved working towards consensus on addressing challenges to progress around achieving equitable access to care and shaping rare disease care pathways that meet patient needs while remaining practicable and affordable to healthcare providers. This report summarises workshop outcomes from these two workstreams, in which stakeholder participants identified a ‘guiding star’ determining the direction of ongoing focus, defined achievable ‘near star’ milestones, and enablers and constraints to achieving these. Guiding Stars The Access Equity Workstream proposed focusing on developing a healthcare system that enables patients to benefit from care and treatment fairly and impartially. The Future Care Pathways Workstream agreed that their focus would be on developing care pathways that provide the right intervention at the right time by the right healthcare professional in the right formats with a variety of delivery methods to suit the person. Near Stars For the Access Equity Workstream, changes in narrative and behaviour were the achievable milestones that the group agreed to prioritise. Greater stakeholder collaboration and consistent data collection and use will be important enablers for change. Participants proposed greater emphasis on investment and value (instead of cost and return) and a change of mindset from ‘fixing the patient’ to achieving a healthy life through early intervention and preventing comorbidities. However, lack of clarity over what constitutes ‘value’ and around stakeholders' responsibilities, limited outcome measures and resistance to change may constrain progress. A near star for the Future Care Pathways workstream was the development of seamless, personalised care pathways with integrated digital and AI-based technologies to enable real-time measurement of pathway effectiveness. Participants felt that understanding and respecting patient behaviour and the nudges and incentives needed to promote pathway acceptance will be important. As in the Access Equity Workstream, they recognised the role of routine, standardised data collection for measuring outcomes, sharing information and informing decision-making. They predicted that building trust between stakeholder groups (including patients, healthcare providers, academic and life science companies) and using patient networks and advocates effectively would enable collaboration and ensure that patient needs and insights are acted upon. However, financial and legal aspects, inadequate implementation of technological infrastructure, limited systems integration, and lack of stakeholder time, effort and energy are all potential constraints that will need to be addressed.