Patient and public involvement in research

Andrew

Male
Age at interview: 64

Brief outline: Andrew became a lay member on a local research network board after responding to an advertisement in a national newspaper. He thought it would be a good use of his time and the skills he had gained in his career.

Background: Andrew is retired, but he used to work as a teacher before he became assistant director of children’s services. He is married. Ethnic background: White British.

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Andrew answered an advert in a national newspaper looking for lay members to sit on a comprehensive local research network. He had previously been admitted to hospital for what he described as a fairly trivial problem, but caught an infection whilst he was there and became seriously ill. This experience, his interest in the post and a chance to use the skills he had acquired through his career motivated him to apply. The first few meetings he attended were difficult because the other members used a lot of jargon and he said there was a lot of “learning on the job from the first day”. Now he feels more confident and is happy to ask for explanations from the other members, who are very understanding and supportive. 

The types of things Andrew has been doing since he became a lay member, include reviewing research and funding proposals. He has also been involved in developing a PPI strategy for the local research network because they wanted to evaluate the usefulness of their patient and public involvement. They decided to widen the range of people they were talking to by setting up stalls in hospitals, shopping centres and at local events, and speaking to members of the public. He later became the chair of the comprehensive local research network board meetings after being elected by the other members.

Because there are many types of activities to do with PPI, Andrew thinks anyone can get involved, although he thinks they need good training and support. When he started reviewing funding proposals, he was given a mentor, which he found very helpful, and has since mentored other new lay representatives. He thinks this sort of training and support is very important, and even though he has met many researchers who are enthusiastic and willing to do PPI, he feels they could benefit from training and support too. 

Andrew finds PPI interesting and rewarding. He said the main costs of being involved are time and energy. There are some financial costs, but these are always reimbursed, which he thinks is important because it ensures everyone can do PPI. Andrew thinks that working together with researchers and clinicians to improve research is the goal of PPI and that the uniqueness of lay members’ experiences is more important than whether they represent the wider public. He often encourages researchers to do PPI by saying there is “a huge well of enthusiastic altruism out there” and that often people are happy to help out with research because they think it’s important and socially useful.

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