Patient and public involvement in research

Ben

Male
Age at interview: 49

Brief outline: Ben has only been involved in PPI in health research for about 6 months. He has reviewed Participant Information Sheets for research.

Background: Ben has three children and is divorced. He works as a van sales driver. Ethnic background: White/British.

Audio & video

Ben initially became involved in health research as a participant. He got chatting to a research nurse at a birthday party he took his son to and she invited him to take part in a clinical trial as a healthy volunteer. The trial was about asthma, and Ben’s participation involved being weighed and measured, giving a blood sample, having his blood pressure measured, doing some lung function tests and having a bronchoscopy. He was then invited to become a recruitment officer for the trial and has been trying to find participants for it since. 

As well as participating in the trial and recruiting for it, Ben was invited to become a PPI representative. As the PPI rep, Ben reviewed the pre-trial information pack to assess and make recommendations to improve its readability. He thought there was a need to retain the complex medical terms used in the information, but stressed the importance of a colourful, attention-grabbing, easy to read leaflet.

Ben attended a PPI workshop run by a large cancer charity. At the workshop they discussed how best to involve patients and members of the public in research, and what barriers they might meet along the way. One of the key recommendations they made to the charity was to encourage researchers to speak in lay language, and reject jargon and acronyms. Attending this workshop reinforced to Ben that he could have a valuable contribution to make as a PPI representative. 

Although Ben originally got involved in health research as a favour for a friend, he soon realised that he could improve things for others and this is one of factors behind his motivation to be more involved in PPI. He would like to see a nationwide campaign launched to encourage others to become involved too. 

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