Rare Diseases – Innovation in Funding & Reimbursement, and Insight into Societal Preferences.

Despite the continuing progress made in the R&D of orphan drugs to diagnose and treat rare diseases, the issue of rarity continues to ignite controversies and debates on the scientific, economic, and political grounds. While great efforts are being made both nationally and internationally to collaborate and advance in our knowledge and policies regarding rare diseases, little – albeit growing – attention is paid to societies’ values and preferences when it comes to the trade-offs to be made when allocating public resources. Under a constrained health budget, specifically allocating resources to costly orphan drugs necessarily means reducing funding elsewhere. We believe it is fundamental to understand a society’s attitudes relative to rarity in order to inform and guide policy making and to shape the criteria that should be used to allocate health resources. We are thus currently undertaking a two-fold project: On the one hand, we are interested in gaining insight into Spanish physicians’ and the general population’s opinion about whether and how to prioritize the adoption of novel medication for rare diseases – using online surveys. HITT thereby wishes to produce results that could be compared against similar studies done in Norway, Canada, and Sweden (with which we have already established a collaboration) and thus better understand the value that societies attribute to rarity across different countries. If you wish to participate in the general population survey, please find the link here: in English in Spanish (for Spanish residents only) On the other hand, we are launching a discussion to explore alternative and innovative pharmaceutical models in which manufacturers could develop more affordable orphan drugs while remaining self-sustaining...

Jornada “Innovació en la contractació al sector sanitari” – Barcelona, 17 de juliol 2015

En un marc d’una creixent pressió sobre el sector sanitari, cal plantejar solucions més enllà del preu i dels anomenats “Acords de Risc Compartit”. La legislació vigent ofereix camins per a buscar noves alternatives, que pretenen fomentar la participació de tots els actors del sistema. Us convidem a reservar-vos el matí del proper 17 de Juliol de 2015 (9-14h) per a participar en una Jornada sobre Innovació en la Contractació en el sector sanitari, en la que participaran ponents de l’àmbit europeu, nacional i local. Enfocats cap a la transferència, s’abordaran els nous models de contractació, les potencialitats de la col·laboració públic-privada i els seus límits, i de com el sector pot beneficiar-se d’aquesta relació.  Lloc: Sala d’Actes, Edifici Salvany, Departament de Salut; Carrer de Roc Boronat, 81-95; 08005 Barcelona Quan: 17 de Juliol 2015, de 9:15 a 14h Descarrega l’agenda en...