Carrying out the research

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.