Patient and public involvement in research

Dave G

Male
Age at interview: 67

Brief outline: Dave has been doing PPI in health research for about four years. He started as a member of a community panel working to improve patients’ experience in hospital before getting involved with a research project.

Background: Dave is married and has one daughter, who is 30. He is retired, but worked as a deputy head teacher in a junior school. Before that, he trained as a nurse. Ethnic background: European.

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Dave is a member of a community panel that works with hospitals to improve patients’ experiences. The panel was informed about a research team that was looking for citizen researchers to do some PPI. So, Dave volunteered and, after a preliminary interview, he and another person became members of the research team. Initially he didn’t understand what was going on and felt quite intimidated by some of the language people used. He started off feeling bewildered, then slowly began to acclimatise before having a ‘breakthrough moment’ where he realised what he could bring to the project, and that’s when he felt he started to be productive. 

So far in the research project Dave has observed focus groups and analysed the findings, attended conferences and given presentations about his experience of PPI. As well as gaining a lot of knowledge about research, he’s had a lot of fun doing PPI and thinks it has helped build his self-confidence. He believes that you make your own involvement by being proactive and coming up with ideas and suggestions rather than waiting to be told what to do. This involves working as part of the research team, respecting the people leading the team, and understanding where you fit into its structure. 

When he got involved in PPI, Dave didn’t really receive any training. He would have liked to have done an introductory course to learn about research methods. He thinks there should be some sort of qualification that citizen researchers could do to train them for PPI and to help researchers choose people to work with. He believes it is important for citizen researchers to be professional, work as part of a team, read around the research area, be able to listen and be committed to doing PPI. 

Dave feels well supported by the researchers he’s working with, but thinks researchers in general should be educated about the benefits of including citizen researchers in their work. He thinks citizen researchers are important because they bring variety and experiences that researchers may not have had, but it is difficult to get people from all backgrounds involved in PPI because of work or other commitments. He would encourage other people to get involved saying, “It's really rewarding and you're making a real contribution to research”. 

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