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

Mhairi Aitken; Mary P Tully; Carol Porteous; Simon Denegri; Sarah Cunningham-Burley; Natalie Banner; Corri Black; Michael Burgess; Lynsey Cross; Johannes Jm van Delden; Elizabeth Ford; Sarah Fox; Natalie K 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

doi:10.23889/ijpds.v4i1.586

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

Mhairi Aitken
, Mary P Tully
, Carol Porteous
, Simon Denegri
, Sarah Cunningham-Burley^* (Corresponding Author)
, Natalie Banner
, Corri Black
, Michael Burgess
, Lynsey Cross
, Johannes Jm van Delden
, Elizabeth Ford
, Sarah Fox
, Natalie K 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

^*Corresponding author for this work

University of Edinburgh
University of Manchester
Wellcome Trust
University of British Columbia
University of Brighton
University of Dundee
Farr Institute of Health Informatics Research
University of Helsinki
Cardiff University
University of Western Australia
EKOS- Social and Environmental Research Associates
Newcastle University
University of Toronto
University of Essex

Research output: Contribution to journal › Article › peer-review

77 Citations (Scopus)

4 Downloads (Pure)

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.

Original language	English
Article number	6
Number of pages	6
Journal	International Journal of Population Data Science
Volume	4
Issue number	1
DOIs	https://doi.org/10.23889/ijpds.v4i1.586
Publication status	Published - 12 Feb 2019

Bibliographical note

Funding Statement
This project was funded by The Farr Institute of Health Informatics Research. The Farr Institute was supported by a 10-funder consortium: Arthritis Research UK, the British Heart Foundation, Cancer Research UK, the Economic and Social Research Council, the Engineering and Physical Sciences Research Council, the Medical Research Council, the National Institute of Health Research, the National Institute for Social Care and Health Research (Welsh Assembly Government), the Chief Scientist Office (Scottish Government Health Directorates), the Wellcome Trust, (MRC Grant No: MR/M501633/2).

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February 2019c©The Authors. Open Access under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/deed.en)
Final published version, 1.19 MBLicence: CC BY

Cite this

Aitken, M., Tully, M. P., Porteous, C., Denegri, S., Cunningham-Burley, S., Banner, N., Black, C., Burgess, M., Cross, L., van Delden, J. J., Ford, E., Fox, S., Fitzpatrick, N. K., Gallacher, K., Goddard, C., Hassan, L., Jamieson, R., Jones, K. H., Kaarakainen, M., ... Willison, D. J. (2019). Consensus Statement on Public Involvement and Engagement with Data Intensive Health Research. International Journal of Population Data Science, 4(1), Article 6. https://doi.org/10.23889/ijpds.v4i1.586

Aitken, M, Tully, MP, Porteous, C, Denegri, S, Cunningham-Burley, S, Banner, N, Black, C, Burgess, M, Cross, L, van Delden, JJ, Ford, E, Fox, S, Fitzpatrick, NK, Gallacher, K, Goddard, C, Hassan, L, Jamieson, R, Jones, KH, Kaarakainen, M, Lugg-Widger, F, McGrail, K, McKenzie, A, Moran, R, Murtagh, MJ, Oswald, M, Paprica, A, Perrin, N, Richards, EV, Rouse, J, Webb, J & Willison, DJ 2019, 'Consensus Statement on Public Involvement and Engagement with Data Intensive Health Research', International Journal of Population Data Science, vol. 4, no. 1, 6. https://doi.org/10.23889/ijpds.v4i1.586

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

Abstract

Bibliographical note

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