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

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...

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Published in:International journal of population data science Vol. 4; no. 1; p. 586
Main Authors: 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
Format: Journal Article
Language:English
Published: Wales Swansea University 12.02.2019
Subjects:
Population Data Science
ISSN:2399-4908, 2399-4908
Online Access:Get full text
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Summary: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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Conflicts of interest: Dr. Aitken reports grants from The Farr Institute at The University of Manchester is supported by a 10-funder consortium led by the MRC (Grant No: MR/M501633/2), during the conduct of the study; Dr. Black reports grants from Farr Institute UK (MRC collaboration), grants from ESRC (ADRC-Scotland), during the conduct of the study; Dr Cunningham-Burley reports grants from Farr Institute UK (MRC collaboration (Grant No: MR/M501633/2), grants from ESRC (ADRC-Scotland), during the conduct of the study; Dr. Denegri reports non-financial support and other from National Institute for Health Research (NIHR), personal fees and non-financial support from University College London, personal fees from Google DeepMind Health, grants from Wellcome Trust, other from a wide range of engagements, speaking invitations and requests for advice consistent with my expertise some of which relates to the submitted work, outside the submitted work; Dr. Goddard reports grants from MRC, during the conduct of the study; Dr. Tully reports grants from The Farr Institute at The University of Manchester which is supported by a 10-funder consortium led by the MRC (Grant No: MR/M501633/2), during the conduct of the study; non-financial support from EuroRec Institute, non-financial support from BioData World Congress, outside the submitted work.
ISSN:2399-4908
2399-4908
DOI:10.23889/ijpds.v4i1.586