Researchers' experiences of patient & public involvement

Pam

Female
Age at interview: 54

Brief outline: Pam conducts social science research. She began involving people in her work approximately seven years ago.

Background: Pam is a Research Fellow. Ethnic background: White British.

Audio & video

Pam started her academic career after working in other jobs, as a travel agent, doing community development work and raising her family. She often provides advice to other academics and clinicians about how to involve people in research and also provides training.  

When asked to define involvement, Pam said it was about doing research ‘with’ people rather than ‘to’ people. She said it has a range of purposes, including making research better and ensuring it isn’t just carried out by experts, but also by ordinary people. She has experienced what it feels like when research is done to you. When she was ill, her consultant treated her using a new treatment and later asked if he could publish her experience as a case study explaining how it had ‘revolutionised’ her life. He couldn’t understand why she asked to be involved in the publication. However, Pam said she has seen other people ‘grow and develop from opportunities to be involved...and it can be very rewarding to see that level of progression.’

As well as conducting research, Pam works with the Research Design Service and is also a member of INVOLVE, the government funded national advisory group that supports involvement. She had to fill in an application form that required a lot of personal information, which came as a surprise to her. Her interview involved working in groups with others, including lay people. She said it was a positive experience and because it was a challenging application process, she said she feels ‘quite proud’ of her membership. She said being a member of INVOLVE is fun and it gives her the opportunity to meet people she wouldn’t otherwise meet. 

Pam said the costs of involvement for researchers include time and emotional labour. She said you need to ‘give of yourself in order to build trusting relationships with other people, especially people that perhaps haven’t been used to having a voice, and that can carry some costs and consequences.’ She explained that researchers may need to develop a thick skin because involvement is another way in which their work can be criticised. But she said there are also benefits to involving patients and members of the public, including the opportunities for research to tackle questions that otherwise may not have been asked. She also said people who get involved benefit by gaining new skills. 

As a qualitative researcher, Pam is somewhat sceptical about measuring the impact of involvement. But she said people want to know what difference their input makes to research, so it is therefore important to try and capture it. She believes there are some types of research in which there is no need to involve people because it would be a waste of their time. But she thinks research is improved by involvement and would encourage researchers who are sceptical about it to think about it.

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