At an INVOLVE Group meeting, members reflected on what they wished they had known before getting involved or involving the public in research. Responses included:
“How much help and support is out there already, that a passion shared is a change in the making……..”
“What matters is finding others who share your enthusiasm and commitment to making it happen.”
“An explanation of how everything fits together and how public involvement could be useful at each and every stage.”
“That professionals were often just as ignorant and/or confused by initials, acronyms, structures as I (as a complete lay person) was. And grateful when I asked.”
“You’ll never get it completely right, inevitably make mistakes and get criticised, but you need not worry too much, learn from it and do it better next time.”
“That public involvement needs dedicated, long term resource and support – but when this is in place the strength and benefit to our research from patients and the public is immense.”
For more information about the learning and development group, see the article in this issue of the newsletter and visit the learning for involvement page on the INVOLVE website: www.involve.nihr.ac.uk/about-involve/current-work/learning/
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