Answer

Prepare the research team to work in a different way than they are used to. They need to be willing to explain the study and the research process in lay language, avoiding acronyms. The team needs to think about what the patient perspective will add and how this will contribute to discussions. Training for one research team member in patient and public involvement is recommended, so they can pass the knowledge onto the rest of the team. The trained person can then also mentor the patient(s) and guide them through the process. A clear explanation of the study, the role of the TSC, the role the patient is expected to perform and the team’s expectations of their contribution are vital. Negotiate details such as how the patient wants to receive information, in what form and how to claim expenses. Set up a system of support for the patient so they feel able to contact someone with any queries or concerns. Use excellent interpersonal skills throughout to make the patient feel that their contribution is valued. Be alert to any difficulties the patient or the researchers are having with the involvement and manage it.

Last modified: Wednesday, 4 March 2015, 3:48 PM