Grant: Planning and Dissemination Grant - Institute Community Support

Patients and caregivers have an expertise in their diseases and illnesses that healthcare professionals and researchers do not have. This expertise is particularly important in chronic diseases such as organ failure and organ transplantation where illness is part of patients' and caregivers' lives. In recent years, the importance of involving patients and caregivers in healthcare services has been increasingly recognized because it increases patients' sense of empowerment and adherence to treatment and also allows healthcare providers to offer services that are relevant to their patients. Engaging patients is not only important in medical care, but also in research. Indeed, engaging patients in setting research priorities increases the relevance and the quality of research, facilitates recruitment, enhances public trust and allows a better dissemination of results. The Canadian National Transplant Research Program (CNTRP) is a multidisciplinary research team looking at different issues related to organ and tissue donation and transplantation. In order to pursue research projects that are relevant for the Canadian transplant community (patients, caregivers, donors, researchers), it is of paramount importance to involve different stakeholders in setting the future research priorities of the CNTRP. The aims of this project are to(i) identify the future research priorities for the CNTRP, via a survey and a national workshop involving patients, caregivers, healthcare professionals and researchers, and (ii) set the groundwork for involving patients at the different stages of the research process in the future.