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Big data researchers and PPIE facilitators

Participants call for the study exploring public involvement and engagement of seldom heard communities in big data research

Big data research has grown considerably over the last two decades. This presents new ethical challenges around consent, data storage and anonymisation. Big data research projects require public support to succeed, and it has been argued that one way to achieve this is through public involvement and engagement.

We follow NIHR definitions:
Public involvement – “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”
Public engagement – “information and knowledge about research is provided and disseminated.” – this usually takes place after the project is concluded.

Achieving diversity in public involvement and engagement is a challenge. Still, it is one of the fundaments for successful involvement and engagement. Lack of diversity can increase health inequalities if views of some groups (especially seldom-heard communities) are ignored.

This study is a part of a broader PhD project aiming to understand how seldom heard communities can be better included in public involvement and engagement in big data research.

As a part of it, we are keen to conduct short (max 30 minutes) interviews with researchers or PPIE practitioners and facilitators who organised/participated or would like to organise public involvement and engagement activities which included seldom heard communities and focused on big data research.

These activities could have been (but not limited to) involving lay public members in the design or governance of big data research, events or social media promotion or dissemination of study findings.

If interested, please email for more information: