Carrying out the research
At this stage, PPI could help you to:
Communicate what your research is about and why it’s important
Stay motivated and focused
Keep a link with your funder (if the funder is from the charity sector)
Example: Alzheimer's Society
Alzheimer’s Society supports a Research Network of people affected by dementia who are interested in being involved in research. All have been offered training about research and about involvement in research.
Every researcher or research study that receives funding from Alzheimer’s Society is allocated a small team of monitors, who are members of the Research Network.
These monitors provide ongoing advice and support to the researchers. Research Network members choose the studies they would like to monitor, once funding has begun.
Monitors meet funded researchers at least annually, but sometimes every six months. During these meetings monitors receive updates on the study and give feedback based on their personal experience of dementia. Input from the monitors can be requested throughout the research study (as appropriate) on:
Study plans
Methods
Participant recruitment
Data analysis
Dissemination plans
Communication to a lay audience
Patient literature in advance of ethics submission
After each monitoring visit, the monitor team provides a brief report for Alzheimer’s Society on the visit, the progress of the research and their impressions of the research.