Researchers' experiences of patient & public involvement



Brief outline: Adam is a clinician and researcher, who has been involving patients in his research for about 24 years, but only recently began to do it on a more formal basis.

Background: Adam is a professor of cognitive and behavioural neurology. Ethnic background: White British.

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Adam’s job is equally divided between clinical practice and research. He mainly treats patients with cognitive or sleep disorders, and his research is about a type of epilepsy that causes periods of forgetting. 

50 people were recruited to participate in a study Adam did and he has since kept them up to date with all aspects of its progress. Some were interested in becoming involved in commenting on the research, so Adam sent them the plans for the study. He considers this the first time he formally involved people in his research, but said he’d always based his work on the experiences of his patients. Adam thinks this involvement has changed some of the detail, but not the main principle of the research. But on a different research project he has been working closely with two patients whose concerns have taken the research in new directions. 

Adam believes involvement will make research better. He said patients may think of research questions that researchers may not have thought of themselves and will help them focus on the things that matter to the people living with the conditions that are being studied. As potential participants, patients might see problems with the research that the researchers may not have seen otherwise. 

Adam thinks involvement may benefit from being representative and therefore able to reliably capture the views of the majority of the people in the population. He thinks this could be done by encouraging people who wouldn’t ordinarily get involved to come forward, by getting their views through questionnaires and by being selective about who you involve, not just involving the first people who offer. 

Currently, involvement doesn’t take up too much of Adam’s time because it’s not difficult to involve patients when you’re a practicing clinician. He thinks it’s important to be a good communicator and be able to ‘translate the language of science’ and try to make people enthusiastic about what you’re doing and interested in it. In future, Adam intends to involve people at the early stages of research and he would encourage other researchers to do the same.


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