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

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Mhairi Aitken Mary P Tully Carol Porteous Simon Denegri Sarah Cunningham-Burley Natalie Banner Corri Black Michael Burgess Lynsey Cross Johannes van Delden Elizabeth Ford Sarah Fox Natalie Fitzpatrick Kay Gallacher Catharine Goddard Lamiece Hassan Ron Jamieson Kerina H Jones Minna Kaarakainen Fiona Lugg-Widger Kimberlyn McGrail Anne McKenzie Rosalyn Moran Madeleine J Murtagh Malcolm Oswald Alison Paprica Nicola Perrin Emma Victoria Richards John Rouse Joanne Webb Donald J Willison
Published online: Feb 12, 2019


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.


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