Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research

Author:

Aitken Mhairi,Tully Mary P,Porteous Carol,Denegri Simon,Cunningham-Burley Sarah,Banner Natalie,Black Corri,Burgess Michael,Cross Lynsey,Van Delden Johannes,Ford Elizabeth,Fox Sarah,Fitzpatrick Natalie,Gallacher Kay,Goddard Catharine,Hassan Lamiece,Jamieson Ron,Jones Kerina H,Kaarakainen Minna,Lugg-Widger Fiona,McGrail Kimberlyn,McKenzie Anne,Moran Rosalyn,Murtagh Madeleine J,Oswald Malcolm,Paprica Alison,Perrin Nicola,Richards Emma Victoria,Rouse John,Webb Joanne,Willison Donald J

Abstract

This consensus statement reflects the deliberations of an international group of stakeholders with a range of expertise in public involvement and engagement (PI&E) relating to data-intensive health research. It sets out eight key principles to establish a secure role for PI&E in and with the research community internationally and ensure best practice in its execution. Our aim is to promote culture change and societal benefits through ensuring a socially responsible trajectory for innovations in this field. Our key premise is that the public should not be characterised as a problem to be overcome but a key part of the solution to establish socially beneficial data-intensive health research for all.

Publisher

Swansea University

Subject

Information Systems and Management,Health Informatics,Information Systems,Demography

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