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).

CMSS and NHC Primer – Enhancing Patient Partnerships: How Patient Organizations and Medical Societies Can Enhance Patient Engagement in Clinical Registries and Research

Includes the following helpful information for patients, patient organizations and medical societies:

Background and Patients
Understanding Clinical Registries
Roles of Registries
How Patients can be engaged in Clinical Registries and benefit from engagement
How do Medical Societies and Patient Organizations benefit from patient engagement
Case Example: A Specialty Society and Patient-Group Partnership: ASRM/RESOLVE/SART