Patient and public involvement in research

Richard

Male
Age at interview: 54

Brief outline: Richard has been a patient and public representative for about 13 years. He got involved after being diagnosed with cancer. During treatment, he kept a diary that was passed from the health professionals and researchers treating him to the chief executive of a national cancer charity, who invited him to help with some research about information-seeking habits of patients.

Background: Richard is single and formerly worked as a senior manager in local government before giving up work to do patient and public involvement. Ethnic background: White British.

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During his cancer treatment, Richard took part in a clinical trial. He kept a diary about his experiences, which he used as a way of keeping in touch with people. The hospital staff sent it to the chief executive of a national cancer charity, who then invited Richard to get involved in some research about the information-seeking habits of patients. From there he began to get invited to join other groups and committees. Initially he found it difficult to understand what was going on in the committee meetings he attended, but he had expected to feel like this. The committees started doing pre-meeting briefings in which he and the other patients could have a ‘dry run’ of what they wanted to say, which, along with the training he attended, helped him to find his feet. 

Richard thinks the goal of PPI is to add value to research. His reasons for getting involved were to give something back to the NHS, but also to find out more about cancer research and treatment, especially the kind he’d had. The work he does is about two things: explaining research to patients and recruiting them to take part in research. He found he enjoyed it so much that he decided to give up his job to do more. Since then, he has been a co-applicant on funding proposals and a co-author on a research publication, which is he very proud of. He said the writing process was longer and harder than he thought it would be. In the end, the article wasn’t written in the Plain English style that he would have preferred, but he understood that the academic language it was written in was what the people reading it would expect. 

Because discussion about research happens in groups, Richard said it’s difficult to measure the impact of PPI and to tell who changed what, but there are examples of where it made a difference. He mentioned trials that were failing to recruit until the information sheets were revised by patients, and others that were thought to be too difficult until patients made suggestions about how to improve them. 

Over the 13 years he has been a patient and public representative, Richard has seen several changes in PPI. There are now more patients getting involved and they are better informed about it. He also believes that researchers are more knowledgeable about PPI and see it as an important and valuable thing to have. Richard said there are definitely roles in PPI for people to be involved in in the long-term, but he thinks that patients should move on to work on different committees and with different groups to keep things fresh. He would encourage others interested in doing PPI to do it, but to think about what they want to do and how they want to do it before they get involved.

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