Empowering Independent Patient Advocacy to Drive Meaningful Health Policy Reform

Patients are frequently referenced in policymaking, yet seldom have the opportunity to meaningfully drive policy development from start to finish, widening the gap between bioethics research and the actual needs of communities. This project aims to address this challenge by equipping congressional staff with evidence-based tools, including a practical roadmap for ethically and effectively engaging with patient advocacy groups and clear methods for assessing the organizational independence of private healthcare interests. As a young adult patient-led organization, the team at Generation Patient seeks to ensure that policymakers have the necessary tools and resources to engage meaningfully with the current and next generation of patients.