OxDARE researchers are committed to involving members of the public at all stages of their work, from inputting into research questions to study design and communication of results. Patient and Public Involvement (PPI) has provided OxDARE researchers with valuable first-hand insight into cognitive decline. OxDARE PPI activities have included providing one-off feedback on the OxDARE newsletter to a dedicated study-specific research panel that meet on a regular basis to discuss their experience in research and guide our practices. PPI contributors have even presented at UK conferences to share their thoughts more widely within the research community. See some examples below.
For more information on PPI or opportunities to get involved, click here.
EPAD Participant Panel
The European Prevention of Alzheimer’s Dementia (EPAD) study was established to better understand the risks for developing dementia in people of 50+ years of age with no dementia diagnosis. 2,096 people participated between May 2016 and February 2020, providing a wide range of cognitive, clinical and neuroimaging data. To actively involve participants in the design and conduct of the study, EPAD invited volunteers to form panels in England, France, Scotland, Spain and The Netherlands. They went on to influence ethical issues, study documents and the experience of study visits. They also presented the participant perspective at stakeholder forums. For a fuller explanation of the EPAD Participant Panels, read a paper here, authored by the participants and researchers involved.