4 minute read

Patients as Partners

CMSS and our member societies share a commitment to serving patients as our top priority. At CMSS, we work to actively incorporate the patient voice across all our activities, including in our meetings and educational offerings, in our research efforts, and in our Board leadership. CMSS has received two important Patient-Centered Outcomes Research Institute (PCORI) Engagement Awards, which seek to increase the role of the patient in the traditional medical research enterprise.

The first award, received in 2018, funded a CMSS project focused on engaging patients in clinical registries, while the second, received this year, will support a new partnership with the Patient-Led Research Collaborative (PLRC).


While specialty societies have used clinical data registries to measure outcomes, improve the care of their patients, and address research questions, few have incorporated the patient voice into their registries. In response, CMSS developed two new resources in support of specialty society/patient organization collaboration on registry development. The CMSS Primer for Specialty Societies and Organizations Developing and Advancing Clinical Data Registries was designed for specialty societies, offering specific strategies and methods for developing and implementing patient-centric approaches to registry development.

A companion primer, How Patient Organizations and Medical Societies Can Enhance Patient Engagement in Clinical Registries and Research, was developed in partnership with the National Health Council (NHC), an organization focused on providing a united voice for the 160 million people in the U.S. living with chronic diseases and disabilities and their family caregivers. This resource, released in March 2020, helps patient organizations learn about the many aspects of registries sponsored by specialty societies, makes the case for the vital importance of patient engagement in registry development, and offers ideas about how patient organizations can get involved in registry development. The project concluded with a webinar highlighting best practices and learnings from CMSS member societies who are engaging patients in their registries and research efforts.

The webinar and primers provide invaluable information for medical specialty societies and for patient organizations, highlighting critical first steps in moving beyond token patient participation on advisory panels and committees to truly meaningful patient engagement.

Helen Burtstin, CMSS, CEO


With the second award from PCORI, CMSS began an ongoing partnership with the Patient-Led Research Collaborative for Long COVID, known as PLRC, to develop new models for patient-led and patient-centered outcomes research and to build bridges between the patient and clinical communities.

PLRC, a self-organized group of Long COVID patients, was established to drive research to capture and share a bigger picture of the experiences of patients suffering from COVID-19 with prolonged symptoms using a datadriven approach.

Absent better studies, long-haulers did their own. By surveying their own community, members of the Patient-Led Research Collaborative produced what remains the most comprehensive analysis of long COVID, and one of the few to consider the arc of symptoms over time.

– The Atlantic

CMSS first met PLRC leaders at one of our COVID-19 Webinars. Their innovative work and unique organizational structure impressed us as a model for driving patient leadership in research. PLRC’s team of researchers, all with intimate knowledge of COVID-19, represent a variety of relevant fields— participatory design, neuroscience, public policy, data collection and analysis, human-centered design, and health activism—and they set the standard for how patient-led networks of those experiencing Long COVID could frame important research questions for the field. In the PLRC model, patients are not merely research contributors but are leaders of survey and research design.

Ultimately, CMSS’s collaboration with PLRC will demonstrate how specialty societies, research institutions, and other traditional biomedical research teams can build the infrastructure for patient-led participatory comparative effectiveness research. We will work together to explore how we can take what we learned from this model and lead efforts to increase research capacity in the patient community; drive institutional support for patient-led research efforts; and build bridges to the medical research community to support patient-led research design.