RESUMEN
BACKGROUND: The success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research. OBJECTIVE: This review aims to synthesize the evidence on public involvement and engagement in big data research. METHODS: This scoping review mapped the current evidence on public involvement and engagement activities in big data research. We searched 5 electronic databases, followed by additional manual searches of Google Scholar and gray literature. In total, 2 public contributors were involved at all stages of the review. RESULTS: A total of 53 papers were included in the scoping review. The review showed the ways in which the public could be involved and engaged in big data research. The papers discussed a broad range of involvement activities, who could be involved or engaged, and the importance of the context in which public involvement and engagement occur. The findings show how public involvement, engagement, and consultation could be delivered in big data research. Furthermore, the review provides examples of potential outcomes that were produced by involving and engaging the public in big data research. CONCLUSIONS: This review provides an overview of the current evidence on public involvement and engagement in big data research. While the evidence is mostly derived from discussion papers, it is still valuable in illustrating how public involvement and engagement in big data research can be implemented and what outcomes they may yield. Further research and evaluation of public involvement and engagement in big data research are needed to better understand how to effectively involve and engage the public in big data research. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-https://doi.org/10.1136/bmjopen-2021-050167.
RESUMEN
BACKGROUND: Working together and co-production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey. OBJECTIVE: A doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research. METHODS: Using the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four-dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way. RESULTS: Public advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed. CONCLUSION: Public advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views. PATIENT AND PUBLIC INVOLVEMENT: Two public advisors were involved throughout the 3 years of this doctoral research. They co-evaluated this involvement and are co-authors of this paper.