Researchers' experiences of patient & public involvement


Age at interview: 59

Brief outline: Sergio previously worked as a clinical neurologist before pursuing a career in academia. He has been involving people in research for about 30 years.

Background: Sergio is professor of cognitive human neuroscience. Ethnic background: White Italian.

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Research has always been embedded in the care Sergio provided for his patients when he was working as a clinical neurologist. When he moved into research full-time he found that recruiting patients became more difficult because he was seen as an external person. He feels strongly that researchers should be more involved with patients and carers, and worries that the bureaucracy of research may discourage junior researchers from choosing an academic career. For instance, ethics applications can feel like ‘paperwork for the sake of paperwork’ instead of being about safeguarding patients. For junior researchers, building relationships with patients is important so that they know more about the lived experience of illness than what is written in textbooks. 

As some of the great discoveries have occurred through ‘blue sky research’ when scientists have been following their interests without knowing what might result, Sergio feels that research shouldn’t always need to have a practical application. But he believes involvement humbles research and encourages researchers to think of patients as people rather than symptoms. He said the aim of involving patients is not to change the science of the proposed studies, but to increase understanding of the patient’s position and ensure that the research is worthwhile. 

Sergio pilots all his work with patients and carers. They review proposed research and, when it is funded, monitor the work. He described this as ‘an elating experience’. He’s found it enjoyable and the feedback he receives is useful for putting his research into perspective. 

In the future, Sergio would like to see closer relationships being developed between skilled clinicians and young researchers so they have ‘the opportunity to be exposed to the clinical world and understand more about the patient’s needs and sorrows and hopes and avoid considering them solely as a source of data’.


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