Huntington Academy
▶Summary
Our main goal was to empower the HD community through knowledge, skills, and collaborative learning, ultimately promoting improved care, advocacy, and quality of life among individuals and familie...
▶Objectives
Our main goal was to empower the HD community through knowledge, skills, and collaborative learning, ultimately promoting improved care, advocacy, and quality of life among individuals and families impacted by this complex disease. We wanted to foster equity and equality in access to care and answer to the needs of the wider and heterogeneous HD community (individuals, families, patient representatives, professionals, researchers, friends, etc.). The Huntington Academy was designed to: Strengthen HD care management expertise among both formal and informal caregivers; Enhance the quality of life and social inclusion of vulnerable individuals; Support the development of multidisciplinary care teams; Improve digital competence and the ability to use e-resources for personal and professional growth; Address geographical and socioeconomic disparities across Europe that lead to scarce or inadequate care, particularly for HD families in remote and/or lower-income communities.
▶Activities
We designed and implemented a multilingual, multidisciplinary and patient-centred educational e-resource for HD caregivers, with contents jointly produced by patient organizations, family members and healthcare professionals from distinct countries. To this end, we carried out the following actions: Held 20 online and 3 in-person team meetings; Set up the e-learning platform interface; Created national advisory groups in Belgium, Bulgaria, and Spain (32 contributors: 14 family members and 18 professionals); Held 3 country-specific online sessions to present the project and 32 semi-structured interviews to gather the real-life caregiving experiences; Transcribed, validated, translated, and integrated all contributions into 9 courses in 4 languages; Produced a tutorial video; Launched a feedback survey; Officially presented the platform via an EHA webinar; Promoted the Huntington Academy nationally and internationally through country-specific in-person and online meetings, and the joint creation of flyers, roll-ups and an online social media campaign; Analysed user data; Disseminated results through conference posters, journal publication, and collaborations with key European organisations.
▶Impact
This project offers a new, free, multidisciplinary educational e-resource to improve the care practices in HD and expand the knowledge and expertise about this complex disease - the Huntington Academy (https://huntington-academy.org/). The project team has created two core courses about HD basics and Communication skills in HD care and seven domain-specific courses. All the contents of Huntington Academy were jointly created by patients organizations, family members and healthcare professionals and are available in English, Bulgarian, French, and Spanish. The European HD community has now an innovative, high-quality and comprehensive e-learning program about HD care management, which can promote the equity and inclusiveness in the access to care, can be replicated and adapted by its members and used by other clinical populations. This project was able to empower the HD community and overcome language and geographical constraints by offering an easily accessible, diverse and multilingual educational resource based on the real-life experiences of knowledgeable HD caregivers from distinct countries.