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

Mhairi Aitken¹, Mary P Tully², Carol Porteous¹, Simon Denegri³, Sarah Cunningham-Burley¹, Natalie Banner⁴, Corri Black⁵, Michael Burgess⁶, Lynsey Cross⁷, Johannes Jm van Delden⁸, Elizabeth Ford⁹, Sarah Fox², Natalie K Fitzpatrick¹⁰, Kay Gallacher¹¹, Catharine Goddard¹², Lamiece Hassan², Ron Jamieson¹³, Kerina H Jones⁷, Minna Kaarakainen¹⁴, Fiona Lugg-Widger¹⁵, Kimberlyn McGrail⁶, Anne McKenzie¹⁶, Rosalyn Moran¹⁷, Madeleine J Murtagh¹⁸, Malcolm Oswald², Alison Paprica¹⁹, Nicola Perrin²⁰, Emma Victoria Richards^{7

21}, John Rouse²², Joanne Webb²³, Donald J Willison¹⁹

Affiliations

¹ University of Edinburgh, Usher Institute of Population Health Sciences and Informatics, NINE Edinburgh BioQuarter, 9 Little France Road, Edinburgh, EH16 4UX.
² University of Manchester, Div Pharmacy and Optometry, Oxford Road, Manchester, M13 9PL, UK.
³ NIHR, INVOLVE, Alpha House, University of Southampton Science Park, Chilworth, Southampton, SO16 7NS, UK.
⁴ Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE, UK.
⁵ University of Aberdeen, Institute of Applied Health Sciences, Aberdeen Centre for Health Data Science, School of Medicine, Medical Science and Nutrition, Foresterhill, Aberdeen AB25 2ZD.
⁶ University of British Columbia, Faculty of Medicine, School of Population and Public Health, 2206 East Mall Vancouver, BC Canada V6T 1Z3.
⁷ Swansea University. Population Data Science, Medical School, Singleton Campus, Swansea SA2 8PP, UK.
⁸ University Medical Centre Utrecht, Julius Centre for Health Sciences, Uniwersiteitsweg 100, 3584 CG Utrecht, Netherlands.
⁹ Brighton and Sussex Medical School, Watson Building, University of Brighton, Falmer, Brighton, BN1 9PH, UK.
¹⁰ UCL Institute of Health Informatics, 222 Euston Road, London, NW1 2DA, UK.
¹¹ HeRC Patient & Public Involvement (H@PPI) Forum, The Health eResearch Centre Vaughan House Portsmouth Street Manchester M13 9GB.
¹² University of Dundee, School of Life Sciences, University of Dundee, Dow Street, Dundee, DD1 5EH, UK.
¹³ Public Panel, Farr Institute of Health Informatics Research, Scotland, UK.
¹⁴ University of Helsinki, Center for Consumer Society Research, PL 24 (Unioninkatu 40) HELSINGIN YLIOPISTO Finland.
¹⁵ Cardiff University, Centre for Trials, 702C, Neuadd Meirionnydd, Heath Park, Cardiff, UK.
¹⁶ University of Western Australia, Faculty of Health and Medical Sciences, School of Population and Global Health, 35 Stirling Highway, 6009 Perth Australia.
¹⁷ EKOS- Social and Environmental Research Associates.
¹⁸ Newcastle University, The School of Geography, Politics and Sociology, Windsor Terrace, Newcastle upon Tyne NE2 4HE , UK.
¹⁹ University of Toronto, Dalla Lana School of Public Health, Institute of Health Policy, Management and Evaluation, Health Sciences Building,155 College Street, Toronto, ON M5T 3M6, Canada.
²⁰ Understanding Patient Data, Wellcome Trust.
²¹ CIPHER Consumer Panel.
²² Public Panel, Farr Institute of Health Informatics Research, London, UK.
²³ Administrative Data Service (Administrative Data Research Network), University of Essex, Wivenhoe Park, Colchester, CO4 3SQ, UK.

PMID: 34095528
PMCID: PMC8142968
DOI: 10.23889/ijpds.v4i1.586

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

Mhairi Aitken et al. Int J Popul Data Sci. 2019.

. 2019 Feb 12;4(1):586.

doi: 10.23889/ijpds.v4i1.586.

Authors

Affiliations

¹ University of Edinburgh, Usher Institute of Population Health Sciences and Informatics, NINE Edinburgh BioQuarter, 9 Little France Road, Edinburgh, EH16 4UX.
² University of Manchester, Div Pharmacy and Optometry, Oxford Road, Manchester, M13 9PL, UK.
³ NIHR, INVOLVE, Alpha House, University of Southampton Science Park, Chilworth, Southampton, SO16 7NS, UK.
⁴ Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE, UK.
⁵ University of Aberdeen, Institute of Applied Health Sciences, Aberdeen Centre for Health Data Science, School of Medicine, Medical Science and Nutrition, Foresterhill, Aberdeen AB25 2ZD.
⁶ University of British Columbia, Faculty of Medicine, School of Population and Public Health, 2206 East Mall Vancouver, BC Canada V6T 1Z3.
⁷ Swansea University. Population Data Science, Medical School, Singleton Campus, Swansea SA2 8PP, UK.
⁸ University Medical Centre Utrecht, Julius Centre for Health Sciences, Uniwersiteitsweg 100, 3584 CG Utrecht, Netherlands.
⁹ Brighton and Sussex Medical School, Watson Building, University of Brighton, Falmer, Brighton, BN1 9PH, UK.
¹⁰ UCL Institute of Health Informatics, 222 Euston Road, London, NW1 2DA, UK.
¹¹ HeRC Patient & Public Involvement (H@PPI) Forum, The Health eResearch Centre Vaughan House Portsmouth Street Manchester M13 9GB.
¹² University of Dundee, School of Life Sciences, University of Dundee, Dow Street, Dundee, DD1 5EH, UK.
¹³ Public Panel, Farr Institute of Health Informatics Research, Scotland, UK.
¹⁴ University of Helsinki, Center for Consumer Society Research, PL 24 (Unioninkatu 40) HELSINGIN YLIOPISTO Finland.
¹⁵ Cardiff University, Centre for Trials, 702C, Neuadd Meirionnydd, Heath Park, Cardiff, UK.
¹⁶ University of Western Australia, Faculty of Health and Medical Sciences, School of Population and Global Health, 35 Stirling Highway, 6009 Perth Australia.
¹⁷ EKOS- Social and Environmental Research Associates.
¹⁸ Newcastle University, The School of Geography, Politics and Sociology, Windsor Terrace, Newcastle upon Tyne NE2 4HE , UK.
¹⁹ University of Toronto, Dalla Lana School of Public Health, Institute of Health Policy, Management and Evaluation, Health Sciences Building,155 College Street, Toronto, ON M5T 3M6, Canada.
²⁰ Understanding Patient Data, Wellcome Trust.
²¹ CIPHER Consumer Panel.
²² Public Panel, Farr Institute of Health Informatics Research, London, UK.
²³ Administrative Data Service (Administrative Data Research Network), University of Essex, Wivenhoe Park, Colchester, CO4 3SQ, UK.

PMID: 34095528
PMCID: PMC8142968
DOI: 10.23889/ijpds.v4i1.586

No abstract available

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Conflict of interest statement

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.

Figures

**Figure 1: Adapted from Davidson et al 2013 [12]**

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References

1. Academy of Medical Sciences. Exploring A New Social Contract for Medical Innovation. 2015, www.acmedsci.ac.uk
1. Carter P, Laurie GT, Dixon-Woods M. The social licence for research: why care.data ran into trouble. Journal of medical ethics. 23January2015:medethics-2014. 10.1136/medethics-2014-102374 - DOI - PMC - PubMed
1. Garrety K, McLoughlin I, Wilson R, Zelle G, Martin M. National electronic health records and the digital disruption of moral orders. Social Science & Medicine. 1January2014;101:70-7. 10.1016/j.socscimed.2013.11.029 - DOI - PubMed
1. Research Councils UK. Concordat for Engaging the Public with Research. A set of principles drawn up by the Funders of Research in the UK [Online]. 2010. Available: http://www.rcuk.ac.uk/documents/scisoc/concordatforengagingthepublicwith... [Accessed 27/06/2017].
1. Irwin A. The politics of talk: coming to terms with the ‘new’scientific governance. Social studies of science. April2006;36(2):299-320. 10.1177/0306312706053350 - DOI

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

Affiliations

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

Authors

Affiliations

Conflict of interest statement

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References

Grants and funding

LinkOut - more resources

Full Text Sources