Patient and public involvement in research

Neil

Male
Age at interview: 65

Brief outline: Neil got involved in PPI about three years ago after having a stroke. He wanted to do something that would help him in his recovery.

Background: Neil is married and has two grown-up children, aged 39 and 36. He is a retired NATO Visiting Professor of physics. Ethnic background: White Scottish.

Audio & video

Neil had a stroke about six years ago. As well as some physical problems, his memory and mental sharpness were affected by it. He started doing PPI as a way of restoring some of his former abilities. He contacted Involving People, the main PPI organisation in Wales, and his first activity involved reviewing an information website. Things soon snowballed and he became more involved in health research. 

Before he retired, Neil worked as an academic physicist, so he brought lots of research skills and knowledge to PPI. However, there were some types of research he didn’t really know much about and felt like he was “treading water” until he attended a training course about six months later. Since then he has attended further training and said that, “It builds your confidence so that you can speak the language...and communicate with researchers”. He now presents on courses and teaches others about getting involved in PPI. 

When he first got involved, Neil had some difficulties speaking because of his stroke and preferred taking part in teleconferences rather than attending meetings. The researchers he was working with were happy to accommodate this. He said this was an example of best practice, where researchers listen to lay people and take into account their needs when engaging them in PPI. He thinks evaluation, training and feedback are very important to PPI, so after every project he is involved in, he likes to provide the research team with a report about his experience. He comments on everything from the hotel accommodation to recommendations about how the team could do PPI more effectively. It is also very important to him that feedback is reciprocated and that researchers tell lay people how they’ve put their suggestions into practice. 

When he started doing PPI, Neil found it very exciting and through Involving People applied to help out on all the research projects he could. He is now much more selective because he thinks other people should have the chance to get involved and that the opportunities for PPI should be spread around. He has found that the benefits to doing PPI include travel and meeting interesting people. He also feels it has significantly helped his stroke recovery, especially by improving his self-confidence and through chance conversations he’s had with academics and clinicians about what medication he should be taking since his stroke. 

Neil thinks the attitude to PPI has changed even over the last few years from being tokenistic to involving patients in a partnership throughout the whole process. He said it was important that researchers involve people in PPI who will benefit from the research they’re conducting. He believes in the value of including personal stories in the research process because it makes research better.

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