Patient and public involvement in research

Messages to other people who are involved or are thinking about it

Generally people said they would encourage others to get involved in research, especially if this was something they were already thinking about or thought they might be interested in. Peter said, ‘Just do it, just get involved!’ and he wasn’t the only one. He and others explained that there are a lot of personal benefits to involvement – it’s interesting, fun, enjoyable, you meet great people and, as Janice said, ‘It’s good for your thought processes’. Involvement was also seen as a way of helping others – improved health research leads to better treatment and care for other people, including your family members, and also yourself.
Getting involved can seem intimidating and daunting, especially as the professionals’ use of jargon and acronyms can make it seem as if they’re speaking a different language. But Dave A and Andrew always felt welcomed by researchers and Catherine said, ‘Doctors need you to keep them in control. They're not all scary; they are interested in what you have to say.’ Helen said that people shouldn’t be put off if their first experience of involvement was difficult and encouraged them to keep going. 

It was also acknowledged that involvement isn’t right for everyone, so it’s good to think carefully about what you want to do and why, and research it before you start. Alan explained you can always drop out and others said you can get involved in your own time and at your own pace and choose what way you want to be involved. As Charles said, ‘It's not obligatory, you don't sign contracts, you don't have to do things that you don't want to do.’ You don’t have to be an expert to get involved – you’re bringing your experiences – but there is training available and organisations that support patient and public involvement, like INVOLVE.
People also had messages for those already involved in research. They advised them to feel confident to ask questions and to ask for feedback about what they were contributing; make sure they were thinking about what they were doing and trying to do it in the best way; take advantage of the support available to them, including being buddied-up with someone who is experienced; bring their queries or concerns to the chair before the meeting starts. They also said it was important to act in the right way. Derek said it wasn’t about ‘banging the table about some issue’ and Roger Z advised people to ‘be measured and be thoughtful, but be prepared to be very vocal if you have to be, don't be scared of it.’

Last reviewed July 2017.


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