The Promise of Patient-Led Research Integration into Clinical Registries and Research

Program Webinar Series

A series of webinars will be convened on consecutive Thursdays in January and February 2023. These webinars are aimed at the key audiences for the scorecards: patients/patient organizations, researchers, and funders. The webinars will also be recorded so the information will be available asynchronously for those unable to attend the live sessions. Audience participation will be encouraged as feedback on the scorecards is critical to widespread use and impact.

Learning Objectives:

  • To identify the benefits and challenges associated with patient-led research
  • To understand how the scorecard is utilized in assessing potential collaborations with partners in patient-led research
  • To use the scorecard effectively in evaluating and improving the dimensions of governance, patient burden, integration into the research process, and research partner readiness to improve working with patient-led research teams

Target Audience: Patients/Patient Organizations, Researchers, Funders

Supporting Materials

Webinar Dates and Registration Information:

The Council of Medical Specialty Societies and Patient-Led Research Collaborative Approved for PCORI Engagement Award for The Promise of Patient-Led Research Integration into Clinical Registries and Research Project

Chicago, IL (June 21, 2021) – The Council of Medical Specialty Societies (CMSS), in collaboration with Patient-Led Research Collaborative (PLRC) and SLSampsel Consulting, has been approved for a $241,660 funding award through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). CMSS, a coalition of 45 specialty societies, represents more than 800,000 physicians across the house of medicine that support education, science, and scholarship. PLRC’s patient-led research on Long COVID has demonstrated the potential of patient-led outcomes research. The funds will support capacity building and sustainability models for patient-led, patient-centered outcomes research, while building bridges to the medical research community and fostering new models of collaborative research.  

“We are very pleased to collaborate with an extraordinary patient team at PLRC,” said Dr. Helen Burstin, CMSS’s Chief Executive Officer. “Through this partnership, we will consider more sustainable models for patient-led research, including more collaborative, patient-centered research models between the patient and clinical communities.” 

The Patient-Led Research Collaborative team stated, “The progress that our work has led to for Long COVID is a testament to the promise, effectiveness, and importance of patient-led research. We are thrilled to have the opportunity to research and develop a sustainable model alongside patient communities so patients of all illnesses can be equipped to become partners in research that is centered around their experiences.”

The “Promise of Patient-Led Research Integration into Clinical Registries and Research Project” is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research (CER) and disseminate PCORI-funded study results.  Through the Engagement Award Program, PCORI is creating an expansive network of individuals, communities and organizations interested in and able to participate in, share, and use patient-centered CER. 

 According to Greg Martin, PCORI’s Acting Chief Engagement and Dissemination Officer, “This project was selected for Engagement Award funding because it will build a community equipped to participate as partners in CER and develop partnerships and infrastructure to disseminate PCORI-funded research results.   We look forward to working with CMSS and PLRC throughout the course of their two year project.”  

The CMSS, PLRC, and SLSampsel Consulting collaborative project approved for funding by the PCORI Engagement Award Program was selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit  

PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.