MDEpiNet Coordinating Center actively helps to facilitate patient engagement efforts. Patients are an important part of MDEpiNet and a critical voice on many of its projects. Patient partners work alongside clinicians, researchers, device manufacturers, the FDA, and other federal agency staff to develop and improve real-world data collection and analyses in a variety of clinical areas. They bring the knowledge, experience and perspective of the patient community to MDEpiNet projects, advice to working groups on the needs and interests of the patient community and help develop the real-world data infrastructure that collects and communicates clinical evidence and outcomes that are of interest to patients.
Model 1 – patient partner recruitment by specific clinical areas
This effort engages patients in clinical areas of various CRNs. In this model, patients are recruited by each clinical working group through website announcements and an application process, are selected based on their interests, motivation, and experience being a patient or a caregiver in a specific clinical domain. Example: WHT pilot projects engaged patients in clinical areas such as SUI, UF, POP, and LARC/sterilization. Patient partners participate in an orientation to become familiarized with the project and activities; attend monthly meetings and calls with clinical working groups of their interest; provid feedback to the development of core minimum datasets to ensure that the registries collect patient-reported data; and are essential participants in answering research questions of fundamental interest to the patient community.
Model 2 – patient led roundtable with major stakeholders
This effort primarily engages patients in round-table meetings that bring patients together with agencies such as NIH, academics, device manufacturers and others to assess the current state of evidence relating to their field of medical devices. Example: TMJ piloted the model in TMJ replacement devices. Patients share their stories and concerns about the urgent need for interdisciplinary research and a paradigm shift in TMJ treatment; participate as Steering Committee members, working group co-chairs, working group participants, and co-investigators in the project; identify gaps and next steps to support working groups and establish a roadmap to achieve high-quality real-world data. They also highlight patients’ needs as they too often continue to receive less than adequate guidance and treatment and suffer physically, socially, and economically.
Please contact MDEpiNet@med.cornell.edu if you have any questions or are interested in becoming a patient partner.