Project Summary
Specialty societies have used clinical data registries to measure outcomes, improve the care of their patients, and address clinical research questions. Despite significant growth, few specialty societies have incorporated the patient voice into their registries. Registries that identify comparative research questions and patient outcomes that do not reflect what is most important to patients are unlikely to provide the information that patients need to make critical decisions about their care. The drive toward value has put more focus on outcomes, especially patient-reported outcomes for clinical registries. To find outcomes and research questions that meet patient needs, registries need innovative approaches and tools that produce meaningful patient engagement.
This project aims to develop effective strategies across specialty society registries to engage patients in the selection of patient-centered outcomes and research questions. In this multiphase project, the Council of Medical Specialty Societies (CMSS) and the National Health Council (NHC) will identify innovative approaches to incorporate the patient voice into clinical registries. The collaboration with the NHC will bring a patient voice to each phase of the project plan. NHC will provide advice, guidance, and contacts with its patient advocacy group membership to ensure that patient groups review and provide input at each phase of the project.
A multi-stakeholder Engagement Advisory Committee will select key informants to identify promising practices that can incorporate the patient voice into outcome selection, patient-reported outcome selection, and identification of research questions of interest to patients. The Engagement Advisory Committee will be involved throughout the project. Fifty percent of the Engagement Advisory Committee represents patients and patient groups. Other organizations included in the Engagement Advisory Committee, such as PatientsLikeMe and the Informed Patient Institute, will support further engagement with patients.
The practices will be developed into two primers directed at the registry community and the patient community. Using the primers, CMSS and NHC will build training programs to teach methods for incorporating the patient voice into registries for both patients and registries. The collaboration between CMSS and NHC should provide the building blocks for success. CMSS and its member societies will provide access to clinical data registries and prior efforts to engage patients in their work.
NHC will ensure that each step of the project is considered through a patient lens. Because of this work, the specialty society registries community will increase engagement with the patient community in the prioritization, selection, and use of outcomes and research questions that are meaningful to patients. Patients who utilize the patient-oriented primers and training programs will be surveyed to assess their self-reported ability to engage with the work of clinical registries.