What do public contributors with lived experience know and think about open research?

Le résumé fourni par la source

Involving the people affected in research (sometimes referred to as patient and public involvement; PPI) is one of the principles of transparent open research. This process helps to ensure that clinical and health research is relevant, ethical and accessible (e.g. Sacristán et al., 2016; Brett et al., 2014). The provision of training for members of the public on elements of research is important since they can have a variety of backgrounds. This can help build confidence and expertise for public contributors (PCs), as well as allowing them to more fully engage in the research process and may partially address the power imbalance with researchers (Brett et al., 2014; Richardson et al., 2019). It might be expected that PCs would be familiar with co-production of research and view it as important, but what do PCs know and think about the principles of open research? There has been some research into the views of research participants. A recent (pre-registered) piece of research asked participants in online behavioural studies what they thought about how their data would be used by researchers and issues such as p-hacking and scientific fraud (Bottesini et al., 2022). They found that adults taking part in low-risk Psychology studies found questionable research practices to be unacceptable and were willing for their anonymised data to be shared openly. This shows that research participants are likely to be supportive of open research practices and would want the analysis of their data to be transparent. Other work has focussed on more general issues of data security/anonymity in health research (e.g. Howe et al., 2018). However, there appears to be a gap in understanding the views of PCs around open research and in communicating about open science to this group. Understanding the principles of open research is likely to provide benefits to both PCs themselves and the research carried out. First, it can build the PC’s confidence and understanding of the research process and is likely to be of interest (as has been found in discussions with co-authors of this study). Second, PCs or co-researchers sitting on steering groups, or are involved over the entire lifetime of a research project (or in commissioning or awarding research funding, as in the case for many charities) are in a strong position to encourage researchers to adopt best practices or ask why opportunities to incorporate open research practices have not been taken. For example, they might ask the research team how other researchers will benefit from the findings or data from the project. Or they might ask what will happen if the research findings are unexpected - will they still be published or made accessible as a pre-print so others can benefit from this knowledge? However, it should be noted that responsibility for the integrity of the research rests with the researchers. Finally, as noted earlier there can be security concerns around sharing data from human participants and PCs might advise researchers on how to manage this and the communication about data sharing and use with potential research participants. This is likely to be particularly key for areas where there is mistrust of researchers and their motives, such as autism and deafness, where those with lived experience may not agree with goals such as aiming for a “cure”. Therefore, we carried out a mixed methods survey to find out what PCs already know and would like to know about open research practices, working with a range of PCs to shape the research questions, data collection, interpretation and dissemination. Our first aim was to find out what (if anything) PCs already know about OR and the different types of OR practice. Our second aim was to find out how important PCs thought different OR practices to be and which practices they wanted to know more about. Our third aim was to investigate views around OR training for PC, including potential barriers. A secondary aim was to explore if there were particular sub-groups of contributors with differing views on OR, relating to their prior training and knowledge of research, as well as their type of lived experience. The findings will be used to inform the development of training resources about OR for public contributors.

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.