Background: Haemophilia A and B gene therapies recently received European and US regulatory approvals. People with haemophilia A increasingly use a bispecific antibody for bleed prophylaxis. People with inherited bleeding disorders (PWIBD) have long partnered with comprehensive care teams in shared decision-making, now they face therapeutic options with complex mechanisms of action and potentially unknown long-term implications. PWIBD must continue to be empowered partners in the management of their bleeding disorders (BD).
Aims: European Haemophilia Consortium (EHC) set out to develop an accessible patient-centred educational resource with agility and flexibility to evolve apace of the treatment landscape.
Methods: Directed by an EHC community working group, a multidisciplinary team of learning design experts, medical writers/editors, medical illustrators, and technologists created a mobile phone app to deliver patient education. The app is continually refined with input from testing, online surveys, and community consultation.
Results: The EHC educational app, available for free download (Android/iOS mobile phones), features a progressive topic framework, building a detailed understanding of all therapy options, including complex novel therapies, upon a solid basic knowledge foundation. Multiple learner-driven content exploration pathways, interactive features, and creative presentations (e.g., an original rap video) enhance learner engagement (Figure 1). Self-assessment activities, custom medical illustrations/animations, deep-dive resources, and personalised reference collections empower learners to individualise their interaction with the app to meet their needs. Designed to facilitate frequent content updates and additions, modifications are actively integrated into existing app content, making them instantaneously available without any action required by the learner (Figure 2).
Conclusion(s): The treatment landscape of inherited BDs is evolving rapidly with complex therapeutic options. The EHC therapies educational app offers PWIBD the opportunity to personalise their exploration of this landscape, empowering them with the knowledge and confidence to continue to partner with healthcare providers in its navigation.
