Patients as Partners
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MSS 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).
PATIENT ENGAGEMENT IN CLINICAL REGISTRIES (2018–2020) 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 14
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
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
specialty societies, makes the case for the vital importance of patientengagement 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.
