Patient and public involvement in research

David Z

Male
Age at interview: 68

Brief outline: Following his retirement, David participated in a focus group study to evaluate the experience of stroke survivors and their carers. He became interested in PPI in December 2010 after receiving an online advertisement inviting the public with relevant experience to apply to become lay members of the Stroke Research Network Clinical Studies Group or the Stoke Association Lay Members Panels.

Background: David is married and has two grown-up children. He is a retired senior university lecturer. Ethnic background: White/British.

Audio & video

After his father-in-law had a stroke, David became a service user representative on a committee looking at service delivery for stroke survivors. When he retired from that, he applied to be a lay member in the Stroke Research Network. He was accepted as a member after being interviewed for the position. 

As a patient and public representative, David’s role involves reviewing and commenting on documents that researchers have written, including research articles, poster presentations for conferences and public health pamphlets. Because he is visually impaired, he finds it easier to read documents on his computer screen. This can make his eyes ache so he takes regular breaks. 

David thinks it is important to involve members of the public in research because they help to ensure that public funding is used in the best way to benefit stroke survivors. He feels he can apply both his professional experience teaching nursing and his personal experience of caring for his father-in-law to his PPI work in quite an objective way. He has no problem speaking to professionals after becoming used to that throughout his career, and feels that he has been treated respectfully by the researchers he has worked with. They have appreciated and valued the feedback he has provided. Some have commented on how his opinions changed the way they thought about their projects. As a result of some of the feedback David provided, he has been invited to sit on a trial steering committee. 

In his clinical and educational nursing roles David saw how research benefits practice, so he was keen to take part in PPI. His reasons for being involved are altruistic – he helps others – but they are also “selfish”. He said, “I get an immense pleasure from it. I feel that I am doing something and I’m engaged in something that is benefitting others”. 

Initially, David planned to go overseas to work with the Voluntary Services Organisation when he retired. Unfortunately he was unable to do this and got involved in PPI instead because he didn’t want to waste the knowledge and experiences he had gathered over the years. Getting involved in PPI in health research has allowed him to continue to help others in an interesting and personally beneficial way. 

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