Patient and public involvement in research

Brin

Male
Age at interview: 54

Brief outline: Brin has been involved in PPI in health research for about seven years. He became involved after he had a stroke.

Background: Brin is married with three children, aged 26, 24 and 23. He worked as a secondary school teacher and took early retirement after a stroke. Ethnic background: White/British.

Audio & video

After he had his stroke, Brin tried to return to his job, but soon realised that he could no longer work in the same way as before, so he took early retirement. He happened to hear an advert for a roller skate study being run by his local university and thought it would be good to get involved. Since then, he has worked on more than thirty research projects both as a participant and a PPI representative. 

Initially Brin took part in research to improve his physical problems, but getting involved in PPI changed his to focus to improving the cognitive and psychological side effects of the stroke. He has made a great recovery, but still finds some things difficult. For example, he can feel quite anxious before doing a teleconference because he finds it more difficult to process information from listening alone. 

It is important to Brin that his role doesn’t mean doing other people’s jobs for them, but he is happy to do anything that is reasonable. He believes he is there to be a “true critical friend” to researchers, ensuring that what’s important to patients remains at the front of their minds. The way he discusses issues with researchers is important and he thinks a good PPI rep offers constructive criticism in an informed and tempered way. 

Brin volunteered to participate in a film documenting his PPI journey, which was made available on the NIHR website and was also written about in The Guardian newspaper. He has given some talks promoting the Stroke Research Network he belongs to and would like to present research findings at conferences with the support of academics who could respond to the tough questions that may be asked. 

Over the years, Brin has noticed that PPI has gained more credibility and respect from universities, but, whilst all his financial costs associated with PPI are reimbursed, it usually takes a long time for this to happen and he would like to see this change. He is pleased that opinions about PPI are changing because he strongly believes in the value of patient input in research and would encourage other people to get involved because he has gained so much from it.

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