Metrics in Patient-Centered Drug Development Conference

Patients and patient organizations are invested in making sure new treatment innovations are available and offer value aligned with patient needs, and know their voice is integral to the process. As more resources, time, and energy are put forth by patient organizations to contribute to research and scientific discovery, how do they understand and measure return on their efforts? How have activities such as building registries, funding natural history studies, training research advocates, and assisting in trial recruitment and retention improve groups’ abilities to meet their missions? How do, or could they measure benefits of such activities to the organization, patients, and ultimately the community which they serve?