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

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Program Overview

With funding from PCORI, CMSS is collaborating with the Patient-Led Research Collaborative (PLRC) on Long COVID to foster new models of collaborative research that meaningfully engage patients in clinical registries and research. The playbook and scorecards developed for the project support capacity building and sustainability models for patient-led research. A series of webinars were held in Winter 2023 to share this work with the clinical research and patient communities.

Program Outcomes

The team developed Patient-Led Research Scorecards that:

  • Establish a new baseline of meaningful engagement of patients in research
  • Incorporate patient-led research and patient-generated outcomes data into clinical and research enterprise for comparative effectiveness research (CER)

The scorecards address the following dimensions of meaningful engagement in the research process:

  • Research Organization Readiness
  • Integration Into Research Process
  • Patient/Partner Governance
  • Patient Burden
  • Patient Group Readiness

A Webinar Series was convened in Winter 2023 which launched the draft scorecards to the community of Patient/Patient Organizations, Researchers, and Funders. More information and links to session recordings are below.

The team will present the project and scorecards at the PCORI Annual Meeting, October 4-5, 2023.

Program Webinar Series

A series of webinars was convened in January and February 2023. These webinars are aimed at the key audiences for the scorecards: patients/patient organizations, researchers, and funders. 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

Webinar Recordings:

About the Award

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), 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. 

Program Contact:

Suzanne Pope, CMSS Senior Advisor,