CMSS & NHC Webinar: Patient Engagement in Clinical Registries-CMSS & NHC Webinar: Patient Engagement in Clinical Registries

Video Transcription

Video Summary

In a recent webinar led by Dr. Helen Burstyn, CEO of the Council of Medical Specialty Societies (CMSS), experts discussed best practices and strategies for engaging patients in clinical registries. Supported by the PCORI Engagement Award, the session emphasized the importance of patient involvement in improving healthcare outcomes and quality.<br /><br />Panelists included representatives from CMSS, National Health Council, American Society for Reproductive Medicine (ASRM), Society for Assisted Reproductive Technology (SART), American Academy of Orthopedic Surgeons (AAOS), and the American Urological Association (AUA). They shared case studies and insights on successful patient engagement in clinical registries across various medical fields.<br /><br />Key takeaways included:<br />1. <strong>Collaboration and Early Engagement</strong>: It's essential to involve patients and patient advocacy organizations from the outset to ensure that registries are patient-centered and that outcomes align with patient needs and preferences.<br />2. <strong>Regulatory and Advocacy Partnerships</strong>: Leveraging regulatory requirements and forming partnerships with patient advocacy organizations can drive the development and improvement of patient registries.<br />3. <strong>Effective Communication and Education</strong>: Educating both providers and patients on the importance and use of patient-reported outcomes (PROs) fosters better engagement and data collection.<br />4. <strong>Support Systems and Training</strong>: Providing robust support and training for patient representatives ensures meaningful contributions and enhances the overall quality of the registry data.<br />5. <strong>Continuous Feedback and Improvement</strong>: Regularly reviewing and updating registry functionalities and ensuring bi-directional communication of data between patients and providers help maintain engagement and improve patient care.<br /><br />The session concluded with an emphasis on the value of patient-centered approaches in clinical research and healthcare decision-making, underlining the pivotal role of patient engagement in enhancing the relevance and impact of clinical registries.

Asset Caption

Webinar held 3/20/2020

Keywords

webinar

Dr. Helen Burstyn

CMSS

patient engagement

clinical registries

PCORI Engagement Award

healthcare outcomes

patient involvement

case studies

patient-centered

patient-reported outcomes

support systems

continuous feedback