Public Involvement and Engagement in Big Data Research: Scoping Review.

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.
(©Piotr Teodorowski, Elisa Jones, Naheed Tahir, Saiqa Ahmed, Sarah E Rodgers, Lucy Frith. Originally published in Journal of Participatory Medicine (https://jopm.jmir.org), 16.08.2024.)