Determining research priorities to improve the integration of care for individuals with complex care needs and their caregivers in New Brunswick

Individuals with complex care needs represent a small percentage of the population, but account for a high percentage of healthcare and social services utilization. As a result, these individuals often require care from a team of providers. Failure to connect to needed services leads to negative experiences for patients, caregivers, and the care team. There is a need for more research to improve health service delivery for individuals with complex care needs and their caregivers. There is also an important shift in the way that health research is being conducted, whereby patients and their caregivers are involved as much and as meaningfully as possible throughout the research process. The purpose of this project is to build capacity for engaging patients and their caregivers throughout the research process and to identify research priorities for individuals with complex care needs and their caregivers. This study will lead to three main outcomes: a list of top research priorities that will inform the development of future grant applications, an online patient-oriented research training course, and a patient panel to partner on future grant applications. We will establish an advisory council to oversee our project milestones, which will be comprised of at least three patients. We have engaged many stakeholders in designing this proposal from its early stages (e.g., clinicians, decision-makers, patients). The proposed project responds squarely to the main objective of this funding opportunity through building capacity and developing partnerships to conduct a patient-focused project that will inform future grant applications and the development of recommendations for policy and practice. Our team has a long history of collaboration and the diversity of collaborators and stakeholders engaged will ensure the project's success. They will bridge the gap between research and practice, promoting capacity building and the sharing of knowledge.