Lay representatives are vital to research because they have first-hand knowledge of how certain conditions affect everyday life and can share unique experiences as service users of the NHS. There are several roles that you can fulfil as a lay representative in a research study.
This is when you help to create a study with a researcher based on what problems or issues you are experiencing. In this case you would be referred to as the ‘lay member’.
“To me, I’m involved right from the start of the process. With any patient and public involvement and engagement you can put forward your opinion and influence a research programme.”
– Co-applicant, Leicester’s Hospitals
- Lay member on a board or executive committee
In this role you would sit on the board or committee for a study to oversee how the research is progressing. Alternatively it could be in a much wider role, such as sitting on the NIHR Leicester CRF operational group. These roles bring a vital outside perspective to the groups responsible for clinical research.
- Focus group, discussion group or PPI group participant
This means that you could be part of a group which shares its views on a proposed study or existing and new processes within clinical research. Examples of tasks could be checking information created for patients is clear to understand, suggesting ways to share the results and helping to present these results to other members of the public.
Depending on the role you undertake, you may be able to claim back out-of-pocket expenses, such as travel fares. Speak to the research team or the PPI lead you are working with to find out about expenses and contributions for your time.