Patient and public involvement in research


Age at interview: 56

Brief outline: Peter became involved as a patient advocate after he was diagnosed with lung cancer. He has been doing patient and public involvement in health and medical research for about eight years.

Background: Peter is married. He formerly worked as a business consultant, providing training and consultancy to large technology companies.

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Peter was attending a support group run by a charity for lung cancer patients when he found out about patient and public involvement (PPI). The support group was quite useful for him when he was ill, but when treatment ended and he was feeling better, he felt he didn’t really need it anymore. He wanted to continue doing something to help others, so when he found out the charity was also involved in research he volunteered to be a patient advocate. 

Initially his role involved commenting on participant information sheets and discussing proposed research with researchers. When he reviews research documents, Peter thinks about what the benefits of the research will be and what will happen next when the study is finished. Whilst he still does this, his role has changed to include things like deciding which types of research should be given funding. He has also been involved in discussing the cancer research agenda, for which he had to attend three meetings a year. He enjoyed doing this but was frustrated because a lot of decisions and changes were made by researchers between the meetings that he wasn’t involved in. He said this type of PPI could be seen as “quite far removed from what patients go through” and as a result it’s more difficult to see the impact his work is having.

Because he enjoys doing PPI, Peter often finds it hard to say no when he is invited to become involved in projects because he wants to help out where he can. He thinks people need to be careful not to “over-commit and then under deliver”. He sees PPI as a voluntary activity and whilst he thinks patient advocates’ costs should be repaid, he doesn’t think they should be paid for doing PPI because this could lead to people not fully committing and moving on to other projects that were better paid. 

Peter said PPI is stimulating and it allows him to use the skills he built up in his career. He feels he is doing something valuable, contributing to society and making things better for cancer patients in the future. He thinks children should be taught about PPI in schools as “an activity they could get involved in as good citizens”. He said he would encourage both patients and researchers to do PPI because there are significant benefits to doing it. Along with another patient advocate, Peter devised a training programme to train researchers about PPI because they felt the research community could be better at including patients in research. The training was very successful and the researchers who attended said they changed the way they were doing PPI and felt more confident in involving patients. 


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