JMIR Publications

ABSTRACT

Background:

The success of big data initiatives depends on public support. Public involvement and engagement could be one of the ways of establishing public support for big data research.

Objective:

This review aimed to synthesise the evidence on public involvement and engagement in big data research.

Methods:

The review had two stages. First, the scoping review mapped the current evidence on public involvement and engagement activities in big data research. Second, out of the papers included in stage one, the systematic review synthesised evidence on the delivery and effectiveness of involvement and engagement strategies. The logic model guided data extraction and analysis. Two public contributors were involved in all stages of the review.

Results:

Fifty-three papers were included in the scoping review (stage 1). The review showed how the public could be involved and engaged in big data research. The papers discussed a broad range of activities, and some considered more than one type. The activities included involvement (n=45), engagement (n=25) and consultation (n=7). Only four papers were included in the systematic review (stage 2), hence it was not possible to conduct a synthesis. These provided limited information about how public involvement and engagement activities were delivered and how effective they were in achieving their aims.

Conclusions:

The review discussed how members of the public could and were involved in big data research. What this looks like will differ between projects and initiatives. It has been argued that public involvement and engagement could improve public support for this type of research, but there is limited research on this. Further research and evaluation of involvement and engagement in big data research is needed. This is particularly important as big data use and research is growing and evolving, so public involvement and engagement will need to develop and be responsive to new developments in this field.