OBJECTIVES: The appearance of new drugs for Haemophilia treatment is driving a paradigm shift in Haemophilia management, depicting a challenging scenario that requires reflection on the most efficient measures contributing to shared value. Promoted by the Federation of Associations of People with Haemophilia (PwH) in Spain (FEDHEMO), an observatory was created as a permanent collaborative forum for Spanish haemophilia community. This has allowed us to anticipate needs of PwH and their families and design preparatory actions to cover both, new needs and those of people living with the disease for a long time.

METHODS: An Advisory Committee (AB) of 8 members was designed, including patient advocates, haematologists, nurses and physiotherapists. An additional multidisciplinary panel of 16 experts was set up, including other professional profiles. Throughout individual interviews we addressed PwH present and future unmet needs. Improvement actions were agreed and prioritized throughout two face-to-face workshops with the AB, assessing their impact and feasibility of implementation in our environment.

RESULTS: A roadmap of 89 improvement actions in 4 domains was designed: Institutions, Healthcare (diagnosis and treatment), Psychosocial care and Research & Development (R&D). 21 of them were ranked as priority actions (highest impact and feasibility score) by a multidisciplinary and patient oriented Committee. Actions included in the Institutions and Healthcare domains were considered the most impactful ones. Feasibility scored low in the Institutions and Psychosocial Care domains while actions included in the R&D domain were not considered as high priority.

CONCLUSIONS: We propose a roadmap for healthcare administrations, managers, professionals and the society in order to promote high impact and sustainable innovation approaches towards shared value, based healthcare systems. This kind of multidisciplinary experiences including patients’ representatives are a powerful way to scan future trends and needs and design innovative, effective and a significant contribution to value based healthcare systems.