This project represents a systematic approach to develop training for “doing research differently” through community research partnerships. Our objective is to develop training with usability and value to research partners, focusing on unique needs of rare and/or genetic condition patient-partner trainees. Year 1 involves an expert stakeholder panel formulating consensus on best practices for community research partnership training. Consensus panelists will use their experiences, conceptual work in the science of partnership readiness, and the PCORI patient engagement rubric. Their results will be incorporated into virtual training modules. Year 2 involves two rare or genetic condition community-based research partnerships experiencing training modules over six months. Outcome evaluations will be from trainee perspectives and perceptions. Outcomes and future directions from this project will be patient-partner centered.
The projected outputs from this project are the creation of community research partnership cohorts, and training content for three learning modules of best practices.
Project collaborators include an expert physician consultant; a patient advocate; and patient/caregiving and community advisor partner trainees.