Researchers' experiences of patient & public involvement

Sabi

Female
Age at interview: 50

Brief outline: Sabi is a senior research fellow. In her job she conducts and supervises research, and supports other researchers in involving patients and members of the public in their research. She has been involving people in research for at least four years.

Background: Sabi’s ethnic background is White/European.

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Sabi is a qualitative social scientist and, at the time of interview, was working for the one of the NIHR Collaborations for Leadership in Applied Health Research and Care (CLAHRC). She previously worked in nursing and clinical management and brings this experience to the applied health research she conducts. 

In her role, Sabi leads patient and public involvement (PPI) for the NIHR CLAHRC and Research Design Service, supporting other researchers who aren’t familiar with how to involve people. She described involvement as a way of thinking about research, but not valorising particular methods. Handbooks and checklists are a good starting point, but researchers need to think carefully about how they want to embed PPI in their research. She described it as ‘an attitude of mind [that] needs to be supported by high quality resources and good practical advice’.

When they’re thinking about involvement, Sabi said researchers should have a clear idea about what they want to get from it. She said it has to operate on several levels and that it’s not appropriate to give the responsibility for the project’s involvement strategy to the most junior member of the team. She suggested some of the skills researchers may need to involve people include creativity, a good understanding of the literature, a sense of empathy towards the people you’re researching with, the ability to communicate complex information in an easy-to-understand way, and to help people to think in different ways, giving them space and time and not rushing them or making judgements too quickly.

Researchers have to think about how to involve people who are ‘hard to reach’. Sabi encouraged fellow researchers to work with people in their own communities rather than expecting them to travel to the university or hospital, and to utilise social media. She believed online involvement could encourage people who may not be involved in other ways, but it may also persuade researchers to collaborate and, as Sabi said, may dissuade them from wasting ‘resources on doing very similar projects in adjacent areas’.

If people regularly attend meetings at universities Sabi said they may start to think in the same ways as the researchers and clinicians. She described this as becoming ‘socialised’. This might be less likely to happen if researchers and clinicians went out to communities. Equally, Sabi thinks training people in research methods might take their attention away from their personal experience and lead them to think the research and science are more important. She believes people’s skills should be improved and capitalised on through involvement, but the aim shouldn’t be to train them in research. 

Sabi firmly believes that patients, carers and members of the public have an important role to play in research. Whilst involvement in research is largely a well-developed area, she feels that people could be better involved in improving clinical practice and service design, and believes that the CLAHRCs can make a difference here. However, she doesn’t think researchers will take involvement seriously unless it is given value in the same way as other aspects of academia are (e.g. publishing papers).

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