Researchers' experiences of patient & public involvement

Anne

Female
Age at interview: 32

Brief outline: Anne has been involving patients for several years in a range of projects. She is currently working on a large scale study in which a panel of patients and the public is involved.

Background: Anne has been involving patients for several years in a range of projects. She is currently working on a large scale study in which a panel of patients and the public is involved.

Audio & video

Anne has involved people in health research on several quantitative and qualitative projects. She is involving a patient group in her current research, which is a large scale study being run across numerous sites. The patient group is made up of people who applied for the role and were interviewed before being appointed. They didn’t have to have any particular condition, but are users of the NHS.  

When her current project began, there was no involvement strategy put in place, so Anne and her colleagues constantly have to think of ways of involving the patient group. This can be frustrating and has resulted in them discussing ways of involving members that she thinks are inappropriate. 

Anne thinks involvement is useful when researching a specific topic or illness that researchers don’t have experience of, but she questioned why it’s necessary to involve patients in research that is more generic, asking ‘why is their random health experience more important than mine or yours?’ She believes patients and members of the public have an important role to play in research, but that they should be involved on researchers’ terms – their role should be ‘to steer the ship’ and to be ‘a critical friend’. In her experience, that doesn’t always seem to happen and sometimes she feels like the patient group is telling the researchers what to do.

Like other researchers, Anne has spent a lot of time studying and training to build up research skills. As a researcher you develop, what she described as ‘tacit skills’, which allow you to decide if participants are capable of taking part in research. Such skills are incredibly important, especially for interviewing participants, and they are learned and developed over time. She is wary of asking patients who aren’t trained and haven’t built up these skills to conduct research interviews and qualitative data analysis. However, she thinks that patients should be involved as co-applicants on funding bids, but that their involvement should always be meaningful and never tokenistic. 

Anne is concerned that there isn’t enough known about the potential harm that involving patients and members of the public can do and would like to see more research done on this. She described involvement as ‘fashionable’ and as ‘a shining beacon we must aspire to’ that is seen as ‘a hundred per cent positive’. But she thinks there are problems with involvement that need to be acknowledged. She would advise researchers to involve people who have direct experience of the conditions they’re researching. 

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