Patient and public involvement in research

Catherine

Female
Age at interview: 51

Brief outline: Catherine had been looking after her daughter who was hospitalised after an episode of septic arthritis in her leg when she saw an ad for a PPI member on an allergy, immunity and infection panel. She successfully applied and has been a member for over three years.

Background: Catherine is a self-employed telesales consultant. She is widowed and lives with her 14 year old daughter. Ethnic background: White British.

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Catherine’s daughter was hospitalised with septic arthritis. She was treated with several strong doses of antibiotics because the doctors were unsure which to prescribe. Catherine worried that the medication may have been making her even more ill. When her daughter was discharged, Catherine successfully applied for a parent carer representative position on an allergy, immunity and infection group. Her experience of her daughter’s illness made her very interested in research about drugs for treating children, and she thought she could draw on her experience and education (a degree in microbiology) to bring a parent’s perspective to the panel. She attended a training day with other parent representatives where she learned about her role – to use her experience of her daughter’s illness to put herself in other parents’ shoes and critically review research in that way. She was keen to have an impact on children’s health research and felt she could make a difference. 

The panel she is on is made up of health professionals, academic researchers and PPI representatives. Catherine and the other PPI rep have agreed how to split the role to make it more convenient for both of them. As she works part-time from home, she can be flexible with her working hours and can join meetings in person or over the phone. This is helpful because she has a long-term health condition, which means travelling is very tiring. Her daughter is still adjusting to her father’s death and this flexibility means that Catherine doesn’t have to spend long periods of time away from her.

Since she’s become involved, Catherine is regularly invited to comment on research proposals and documents. She considers how ethical the study is, if it is going to provide valuable information and highlights issues that concern her. She also checks documents the public will see for spelling and grammar. She has been invited to take part in other research projects and is pleased about this because doing a variety of tasks makes her role more interesting. She has found that researchers generally think about most of the important issues for participants, and they try to make the research easy and comfortable for people to take part in.

Being involved in research from an early stage is exciting for Catherine, but she is usually contacted later in the research process. She believes if she takes the time to comment and explain her reasons then she still can impact the research. She feels she has benefitted from being involved in PPI because it has challenged her to work outside her comfort zone. She encourages others to get involved in PPI because they can make a difference and their opinions will be valued.

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