Patient and public involvement in research

Sharon

Female
Age at interview: 44

Brief outline: After her daughter was diagnosed with arthritis, Sharon became involved in setting up a support charity for children. She successfully applied to become a consumer representative on the Medicines for Children Research Network and has been providing a parent’s perspective on health and medical research for about five years.

Background: Sharon is married and has three children, aged 13, 11 and 7. She currently works in education in a clinical research facility at a university, but previously was a research nurse. Ethnic background: White Irish.

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Sharon was involved in setting up a support charity for parents after her daughter was diagnosed with arthritis. She heard that the Medicines for Children Research Network were looking for consumer representatives and a couple of consultants she knew encouraged her to apply for the position. She and two other representatives were appointed after telephone interview. She felt that the application process was important to ensure that people who could draw on their own experience and provide their opinion on research were selected. Sharon wanted to get involved so that she could “try and take something positive out of a negative”, her daughter’s diagnosis. She felt it would be a worthwhile thing to do and has found that to be true. She has benefitted from doing PPI by meeting amazing and inspiring people, and feeling that she’s done something purposeful. She said the research she sees gives her hope for the future and has given her more confidence in herself. Time is the main cost of Sharon’s involvement, but she reviews the documents she’s sent in the evenings when her children are in bed, so she doesn’t feel it takes her time away from them. The Network also sends the documents well in advance so she doesn’t feel rushed or under pressure. 

The Medicines for Children Research Network meets twice a year and Sharon takes time off work to attend. She thinks face-to-face meetings are important because they allow people to get to know each other. She also takes part in a teleconference each month, which she found a bit strange at first, but felt it was probably easier because she had already met the others in person. Between meetings, she receives research documents to read and comment on. When she reads these she thinks about how a parent sitting in a clinic with their child would feel if they received information about that research. She gives her feedback on a form, which is collated with the other consumer representatives’ feedback and sent to the research team. The researchers often respond to show them how their comments have been used. As well as these activities, Sharon has had an editorial about her PPI experiences accepted for publication and has been invited to be a lay judge for a science competition in which researchers are judged on their ability to present science to the public.

When it comes to children’s research, Sharon thinks it’s important that researchers have both the child’s and the parent’s agreement to take part otherwise the study may have problems with trying to keep participants involved. She believes that including parents’ opinions in children’s research will improve it and make it more relevant for patients. She and another consumer have contacted other parents whose children have rheumatological conditions to ask them what research they would like to see being done. They hope this will encourage researchers to research what’s important to parents. As Sharon used to work as a cancer research nurse, she knows what it’s like from the researcher’s point of view. But it has been about 10 years since she worked and she thinks a lot has changed in the way people think about research, so she feels she can separate her professional experience from her experience of being a parent.

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