Grant: Planning Grants

Because they live with their disease, patients and their caregivers should have a voice in setting research priorities. The James Lind Alliance (JLA) in the United Kingdom has developed a process for determining the research priorities of patients, caregivers and clinicians, which they have implemented in a number of conditions. Often, patients have identified research priorities that are different from those of researchers, and some of those priorities have now been converted into research projects. We propose to identify the research priorities of patients on dialysis, their caregivers and clinicians, using a process based upon that of the JLA. There are four key steps. First, potential research priorities will be identified through a wide-ranging survey of patients, caregivers and clinicians. These typically identify between 100 and 600 items. Second, these research priorities are compared with databases of existing evidence to remove those that have already been answered. Third, an interim prioritization process groups the priorities into categories and narrows them down to between 20 and 40 important research priorities. Fourth, a face-to-face meeting of about 20 people will identify the ten most important research priorities, from the interim list. With this grant, the CIHR is being asked to support the face-to-face meeting described in part four above (funds have been obtained for the rest of the project). This meeting will generate the top ten research priorities of dialysis patients, caregivers and clinicians, which will be of interest to patients, researchers, research granting agencies and health charities. To the best of our knowledge, this is the first such priority setting exercise in dialysis, and the first time the JLA methodology has been piloted in Canada.