Researchers' experiences of patient & public involvement

Messages for people who get involved in research

We asked researchers what messages they would have for people who are already involved or thinking about it.

The overwhelming message was thanks – gratitude for people’s time, their commitment and the value they bring to research. Researchers said they had felt inspired and impressed, and reminded about the real purpose and value of health research. Ceri’s comment was typical: “They put a huge amount of energy in and I can think of some people who really struggle health-wise and their commitment impresses me enormously. And I’m grateful for that, I don’t want to take it for granted, I do want to thank them.” Carl, Alice and Rebecca all pointed to the real difference people can make to the quality of research.
For those thinking about involvement, researchers acknowledged that it won’t appeal to everyone, and sometimes it can be an uncomfortable or challenging role. But equally they wanted to encourage people to give it a go, and described some of the benefits they thought people got from involvement. These included: knowing you are doing something valuable and finding this rewarding; learning new skills; enjoyment; aiding your own recovery; and gaining a supportive network of other patients or carers.
A few researchers suggested ways in which people who get involved could improve the process by insisting on greater clarity about what to expect; not being shy to ask questions or challenge; recognising that researchers are doing their best. Narinder wanted people to know that researchers can’t act on every suggestion but they still value the input.


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