Future Care Pathways – A report from the 1st workshop of the EHC Think Tank Workstream on Future Care Pathways

Abstract Introduction A care pathway is defined as “a complex intervention for the mutual decision-making and organisation of care processes for a well-defined group of patients during a well-defined period.” The European Haemophilia Consortium (EHC) established a Think Tank Workstream on Future Care Pathways to identify and address key challenges in shaping future pathways that meet the needs of people with rare diseases while remaining practicable and affordable to healthcare providers in countries with different budgets and resources. This workstream is particularly timely as the introduction of innovative therapies is adding to the complexity of care pathways in some rare conditions. Identifying key challenges During the first virtual workshop of the Future Care Pathways Workstream on 14 February 2023, stakeholders, including healthcare providers, patient groups, researchers, and industry representatives, agreed to focus on four workable themes/challenges: 1. Prioritisation (cost and evidence); 2. Agreeing on a baseline; 3. Digital health; 4. Fragmentation of healthcare. Summary Prioritisation relates to economic and financial challenges in justifying the optimisation of a care pathway for a rare disease within the context of other healthcare priorities. Currently, there is too much emphasis on costs to healthcare systems, and not enough on real-life patient experience and indirect costs to patients and their families. Innovation in pathways is generally considered unaffordable, and cost-effectiveness models are difficult to apply to rare diseases. Agreeing on a baseline for a minimum standard of care in a pathway should take into account variability in patient needs, agency and healthcare system resources. A baseline needs to be agreed upon for each stage of a pathway: first clinical presentation, diagnosis, treatment, and monitoring and follow-up. Lack of awareness, gender and resource inequalities and gaps in evidence are among the issues that need to be addressed. Digital health holds promise but also brings challenges for future care pathways and must be considered from the viewpoint of all major stakeholders: patients, healthcare providers, tech companies and payers. Digital health systems are often developed in silos and do not allow for effective integration and sharing of data. Collaboration from the beginning is essential to the successful integration of digital tool as in healthcare. Fragmentation of healthcare can arise because people with rare diseases may access care pathways through multiple entry points in primary and secondary care, and they may not experience holistic care that takes account of all their needs. Poor communication at multiple levels (e.g. between clinical stakeholders and between clinicians and patients) is a common problem leading to inadequate treatment and care. Fragmentation may also arise when care pathways do not allow for a patient’s evolving needs when he/she is already on a pathway.