Engaging Patients in Clinical Registries

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 Primer for Specialty Societies:

Review the Primer for Specialty Societies and Organizations Developing and Advancing Clinical Data Registries

Includes the following sections:

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

Review the Primer on Enhancing Patient Partnerships

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

CMSS & NHC Webinar: March 20, 2020

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

Watch the Webinar:

Project Team: 

CMSS would like to thank the team of experts who participated in this project, including:

  • Project Lead: Helen Burstin, MD, MPH, MACP, CMSS
  • Project Manager: Sarah Sampsel, MPH, SLSampsel Consulting
  • Project Advisor: Eleanor M. Perfetto, PhD, MS, National Health Council
  • Project Advisor: Norman Kahn, MD, CPE, Convener, Conjoint Committee on Continuing Education (CCCE)
  • Project Support: Mary Crowther, National Health Council
  • Copyediting: Jennifer Rubio: Magic Wand Editing
  • CMSS PCORI Award – Engagement Advisory Committee