Page 1: BRAIN patient and public involvement survey
The members of BRAIN Involve would like to know how we can help and support you in your research.
BRAIN Involve is a public involvement group made up of people who are, or have been, directly affected by neurological diseases such as epilepsy, Huntington’s disease (HD), Multiple Sclerosis (MS) or Parkinson’s disease (PD).
By bringing their personal experiences to the research table, members contribute to the design, development, implementation, and dissemination of research around brain repair and developing new therapies for brain conditions.
If you're a researcher interested in learning more about incorporating patient and public involvement (PPI) into your research of neurological and neurodegenerative conditions complete the following survey.
Tell us about your research
Does your research directly involve people? If Yes, have you involved any public contributors as part of your research (either in the design or management of the research or dissemination of results)?
Tell us about your experience of PPI to date
Have you ever met anyone with the condition you are researching?
Have you had the opportunity to discuss or share your research with people living with the condition you are studying?
Have you ever had to write a lay statement for your funder, a grant application or a paper?
Do you know what constitutes good and meaningful PPI?
If you are working on basic neuroscience questions (ie not carrying out research with people directly), have you thought about how PPI could benefit you and your research?
Have you heard from others about how they have benefitted from involving public contributors in their research?