Researchers' experiences of patient & public involvement

Narinder

Male
Age at interview: 64

Brief outline: Narinder has mostly involved patients with neurological conditions in writing up single case studies about unusual conditions or interventions. He has been doing this for over forty years.

Background: Narinder is a consultant clinical neuropsychologist. Ethnic background: British Asian.

Audio & video

Narinder is a clinical neuropsychologist and has always done some academic research alongside his clinical practice. He has published single case studies, group studies and has authored several books on neuropsychology. He has not involved patients a lot in his work, but has worked closely with some who have had unusual illness experiences or treatment interventions and has published these as single case studies with the help of the patients. 

As a neuropsychologist, Narinder works with patients who have had brain injuries, and the outcomes of their injuries include memory and language problems, which may make it difficult to involve them in research. He has usually involved their primary carer instead. He has also worked with a psychiatrist who had memory problems. He had a great deal of medical knowledge about his condition in addition to the illness experience. Narinder found this dual knowledge very useful.

Narinder said that how you involve people in research can vary from working with patients or members of the public at the beginning and all the way through a study to consulting them at various points. He said it depended on the study, but that it is important to involve people early in the process because it’s not possible to change the design or method of a study in the later stages. He felt that involvement may be especially useful in clinically oriented research where patients can advise on the duration of procedures and how stressful they may be, and thought that patients may not be interested in research that may be more laboratory based, like brain imaging studies for example. 

Narinder thinks involvement is here to stay and said that with the ever increasing use of technology and the internet, patients will become more aware about research. He would encourage other researchers to involve patients saying, ‘it will be something that can only be of a benefit to both patients and researchers’. Equally, he wanted to encourage patients to ‘respect professionals’ judgement in complex issues where we can’t explain everything’.

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