Patient and public involvement in research

Hazel

Female
Age at interview: 67

Brief outline: Hazel has been involved in health research as a lay representative for about 6 years. She joined the Medicines for Children Research Network after beginning a long-term campaign to encourage the health service to provide syringes for parents for administering medication to children.

Background: Hazel is married and has three children, aged 36, 31 and 29. She works voluntarily with a charity for children with heart conditions and their families. Ethnic background: Caucasian/European.

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Hazel has spent many years campaigning for syringes to be used for giving medicine to children. When her son was very ill as a child, she used them to administer his medication and found they were more effective than using medicine spoons. 

Over the years, Hazel has been involved in various PPI roles. She previously worked as an information officer for a research council and wrote up research reports when researchers were unable to. She has also been involved in setting research priorities, disseminating research, writing about and publicising it to members of the research council and other interested organisations. Hazel has also been a lay reviewer for the National Institute for Health Research (NIHR). She uses a structured form to return her comments to researchers. Sometimes these proposals can be written in a very complex way, which makes them difficult for a lay reviewer to understand. 

After submitting an application and having an interview for the position, Hazel joined the Medicines for Children Research Network as a lay member. She attended training that focused on why research was needed and on how randomised control trials worked. She is interested in consent and ensuring researchers approach parents appropriately when inviting their children to participate in research. She is also passionate about ensuring parents and carers are included in all discussions about their child’s care pathway. 

Being involved in PPI has given Hazel the responsibility for ensuring that people get the information they need in an easily understandable format. She is pleased to have an input in the future of cardiac care for children and enjoys the opportunity to make improvements for others. She considers PPI to be good for her quality of life because it involves interesting work and keeps her informed about health care. However, payment isn’t always offered for it and it takes a lot of your time, which Hazel said could otherwise have been spent with family. She sometimes feels ignored and disregarded at meetings, which she described as a small cost to her ego. 

Hazel thinks the skills important for PPI include being interested in health care and having ambition. She feels it is important that PPI is made accessible for members and that meetings should be arranged at times and locations convenient for parents. She has seen people withdrawing from the role because they weren’t actually involved in doing anything, perhaps because the research proposals were considered to be unsuitable for them to review. 

Hazel would encourage others to get involved in PPI, but feels there needs to be payment offered for the role. This will help to include the views of those who ordinarily don’t take part in research. She also said the public face of research needs to be more appropriate, and that acronyms and logos researchers use to publicise their studies may be considered inappropriate by parents of sick children.

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