In 2018, the Council of Medical Specialty Societies (CMSS) was awarded a Patient-Centered Outcomes Research Institute (PCORI) Engagement Award focused on Engaging Patients in Clinical Registries. CMSS is uniquely positioned to identify innovative approaches to capturing the patient voice and develop best practices for organizations to effectively incorporate the patient voice into clinical data registries. The majority of our members support clinical registries as engines for research, evidence generation, discovery, and improvement. This project was designed to provide actionable opportunities for greater engagement with patients on clinical outcomes and research.

This work was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EA #8565).

Engaging Patients in Clinical Registries: Panel Presentation of Best Practices, Lessons Learned and Strategies to Engage Patients in Clinical Registries