Abstract
Involving people with lived experience in research (patient and public involvement or co-production) is one principle of open research (transparent research practices). Involvement of experts by experience helps ensure that clinical and health research is relevant, ethical and accessible. While public contributors are likely to view co-production as important, what do public contributors know and think about other open research practices (e.g., pre-registration, data sharing)? We carried out a mixed methods online survey investigating what public contributors already know and would like to know about different open research practices, working with public contributors to shape the study. The 64 participants had a range of lived experience, which they had contributed to research and were passionate about the benefits of co-production. Although many participants did not know the term ‘open research’, they rated specific practices as familiar and important, seeing the moral imperative. Participants described the balance of practical benefits (e.g., efficiency, transparency) and potential risks (e.g., data sharing, pre-prints). Some practices (e.g., pre-registration) were less well understood, and participants learnt more about open research from the survey. Most participants were interested to learn more, and over 70% indicated an interest in further training. Overall, there is a need and an opportunity to share accessible information and training about open research with those who contribute their lived experience to research. This has the potential to improve research involvement and co-production, as well as the quality and applicability of research more broadly.
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This post is Copyright: | February 9, 2026
Neuro-General