Patient Voices Shape Research: Better Care for Rare Diseases
Creating a Future, Together, for Rare-Disease Research
Tags: Osaka University, Japan, Healthcare & Lifesciences
Osaka University's team has created an "Evidence-generating Commons" for patients with rare diseases, their families, and policymakers to collaboratively set research priorities. This approach shifts patients' roles from subjects to active contributors, using workshops to identify and prioritize research areas. It promotes a more inclusive, effective healthcare by incorporating patient experiences into research planning. The project highlights the importance of patient and family input in shaping health policies.
IP Type or Form Factor: Open Access; Programme & Content
TRL: 2 - technology concept and/or application formulated
Industry or Tech Area: Public Health & Universal Healthcare; Healthcare Consumer
