About this Event

The Council of Medical Specialty Societies (CMSS) and the Patient-Led Research Collaborative (PLRC), funded through a Eugene Washington Patient-Centered Outcomes Research Institute (PCORI) Engagement Award, partnered to develop tools for stakeholders to use in collaborating on patient-led research. Working with patients, patient advocates, funders, the research and medical community and others, CMSS and PLRC explored perceptions of patient communities and traditional research entities on the integration of patient-led outcomes research into the CER enterprise, using Long COVID ​​​as a basis for CER infrastructure development across a range of conditions and advancement of best practices in the recruitment of diverse populations to patient-led research and patient-centered CER.

Participant culture, leadership and governance and barriers and lessons learned emerged as critical areas for collaboration. PLRC and CMSS project staff then developed five scorecards for patients, patient advocates, funders and researchers to evaluate and improve patient-researcher collaborations and ultimately foster stronger collaborations in patient-led CER.

This project moved beyond patient engagement toward a solution where patient-generated data and patient-led outcomes research become essential components of medical research. Long COVID presented a unique opportunity to integrate patient-led research into traditional approaches, advancing patient-led CER.

The following tools and resources were developed and are publicly available at cmss.org:

  • Playbook.
  • Five scorecards: Patient/Partner Governance, Integration Into Research Process, Patient Burden, Research Organization Readiness, Patient Readiness.
  • Three training webinars were convened from January to February 2023; recordings and slides are available online.
  • Frequently Asked Questions.

This webinar focused on the sustainable collaborative patient-led model to be used by stakeholders to assess and advance patient-led research collaborations. The webinar was open to the public and registration was required.


Gina Assaf, MSc
Patient-Led Research Collaborative 

Helen Burstin, M.D., MPH
Council of Medical Specialty Societies     

Lisa McCorkell, MPP
Patient-Led Research Collaborative 

Suzanne Pope, MBA
Council of Medical Specialty Societies​​​ 

Anisha Sekar
Patient-Led Research Collaborative

Hannah Wei
Patient-Led Research Collaborative

Meeting Materials

About this Webinar Series

The PCORI Engagement Award (EA) Program’s "Engagement Awardee Lunch and Learn" webinar series provides a platform for Engagement Awardees to share success stories, lessons learned and strategies for engagement across awardee communities that arise from their PCORI-funded EA project(s). Topics are designed to reach a broad array of stakeholders, offering innovative approaches to consider in real-world engagement and partnership development/maintenance.