Researchers' experiences of patient & public involvement


Age at interview: 49

Brief outline: David is the co-director of a surgical trials unit. When he first started doing research he was sceptical about involvement and felt reluctant to speak to patients. However, since he was asked to join the James Lind Alliance he developed a different way of thinking and now sees involvement positively.

Background: David is the co-director of a surgical trials unit. Ethnic background: White British.

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David is the co-director of a surgical trials unit. When he first started doing research he developed clinical trials that had some patient involvement. However, he explained that in these early trials he and his colleagues, ‘thought we knew best’ and described the type of involvement work he did as ‘tokenistic’ and ‘patronising’. Initially, he was sceptical about involvement, worrying that ‘patients were ill-equipped to make appropriate decisions’. He also felt that involvement took away from the limited amount of time and resources he had for other work. However, over the years, he has experienced a considerable change in how he involves patients and the public and in how he thinks about it. 

It was a combination of reasons that David said led to him becoming less sceptical about involvement. He believes he wasn’t exposed to involvement the right way to begin with, but he learned to think differently about it after he became involved with the James Lind Alliance (JLA). Being part of the JLA made him realise that academics and clinicians tend to think they know what is important to patients. But ‘that’s often not the case’ he said, because ‘what we think we know, we don’t, and the patients often tell us something entirely different’. He learned that it is important to set correct research questions and get the right framework early on in his research, which requires involvement. Looking back, David wonders why involvement wasn’t always part of the research process and feels that it is ‘very late in the day to start asking people who are involved their opinion on matters’.

David believes he’s had an extraordinary journey in terms of involvement. Although he was reluctant to involve people at first, he now finds involvement a rich resource to tap into because he said, ‘you end up with a better research question and better research’. Although he thinks involvement is here to stay, he described it as ‘a bit of a pendulum’, swinging between patients and clinicians or scientists. He worried that it might swing too far in the patients’ direction and said we need to be careful not to undermine clinicians and scientists’ opinions. Partly this is because it would be unfair to ask patients to make decisions that are outside of their knowledge. He would encourage other researchers to involve patients because they will find it rewarding.


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