Public Involvement & Engagement in the work of a data safe haven: a case study of the SAIL Databank

Jones, Kerina; Heys, Sharon; Thompson, Rachel; Cross, Lynsey; Ford, David

doi:10.23889/ijpds.v5i3.1371

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Public Involvement & Engagement in the work of a data safe haven: a case study of the SAIL Databank

Kerina Jones

, Sharon Heys, Rachel Thompson, Lynsey Cross, David Ford

International Journal of Population Data Science, Volume: 5, Issue: 3

Swansea University Authors: Kerina Jones , Sharon Heys, Rachel Thompson, Lynsey Cross, David Ford

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DOI (Published version): 10.23889/ijpds.v5i3.1371

Abstract

Background: The SAIL Databank is a data safe haven established in 2007 at Swansea University (Wales). It was set up to create new opportunities for research using routinely-collected health and other public service datasets in linkable anonymised form. SAIL forms the bedrock of other Population Data...

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Published in:	International Journal of Population Data Science
ISSN:	2399-4908
Published:	Swansea University 2020
Online Access:	Check full text
URI:	https://cronfa.swan.ac.uk/Record/cronfa55517

first_indexed	2020-10-26T17:48:51Z
last_indexed	2021-03-24T04:20:35Z
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It was set up to create new opportunities for research using routinely-collected health and other public service datasets in linkable anonymised form. SAIL forms the bedrock of other Population Data Science initiatives made possible by the data and safe haven environment. Aim: The aim of this paper is to provide an overview of public involvement and engagement in connection with the SAIL Databank and related Population Data Science initiatives. Approach: We have a public involvement and engagement policy for SAIL in the context of Population Data Science. We established a Consumer Panel to provide advice on the work of SAIL and associated initiatives, including on proposed uses of SAIL data. We reviewed the topics discussed and provide examples of advice to researchers. We carried out a survey with members on their experiences of being on the Panel and their perceptions of the work of SAIL. We have a programme of wider public engagement and provide illustrations of this work. Discussion: We summarise what this paper adds and some lessons learned. In the rapidly developing area of Population Data Science it is important that people feel welcome, that they are encouraged to ask questions and are provided with digestible information and adequate consideration time. Citizens have provided us with valuable anticipated and unanticipated opinions and novel viewpoints. We seek to take a pragmatic approach, prioritising the communication modes that allow maximum public input commensurate with the purpose of the activity. Conclusion: This paper has set out our policy, rationale, scope and practical approaches to public involvement and engagement for SAIL and our related Population Data Science initiatives. 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spelling	2021-03-23T11:29:14.4372605 v2 55517 2020-10-26 Public Involvement & Engagement in the work of a data safe haven: a case study of the SAIL Databank c13b3cd0a6f8cbac2e461b54b3cdd839 0000-0001-8164-3718 Kerina Jones Kerina Jones true false 61f095d8f6942db1b4fd65e2053091f5 Sharon Heys Sharon Heys true false 5d2bdee781fad5d610c2d0d19a724c40 Rachel Thompson Rachel Thompson true false edebc5052d8edf25a5c57c8262e0c554 Lynsey Cross Lynsey Cross true false 52fc0c473b0da1b7218d87f9fc68a3e6 0000-0001-6551-721X David Ford David Ford true false 2020-10-26 MEDS Background: The SAIL Databank is a data safe haven established in 2007 at Swansea University (Wales). It was set up to create new opportunities for research using routinely-collected health and other public service datasets in linkable anonymised form. SAIL forms the bedrock of other Population Data Science initiatives made possible by the data and safe haven environment. Aim: The aim of this paper is to provide an overview of public involvement and engagement in connection with the SAIL Databank and related Population Data Science initiatives. Approach: We have a public involvement and engagement policy for SAIL in the context of Population Data Science. We established a Consumer Panel to provide advice on the work of SAIL and associated initiatives, including on proposed uses of SAIL data. We reviewed the topics discussed and provide examples of advice to researchers. We carried out a survey with members on their experiences of being on the Panel and their perceptions of the work of SAIL. We have a programme of wider public engagement and provide illustrations of this work. Discussion: We summarise what this paper adds and some lessons learned. In the rapidly developing area of Population Data Science it is important that people feel welcome, that they are encouraged to ask questions and are provided with digestible information and adequate consideration time. Citizens have provided us with valuable anticipated and unanticipated opinions and novel viewpoints. We seek to take a pragmatic approach, prioritising the communication modes that allow maximum public input commensurate with the purpose of the activity. Conclusion: This paper has set out our policy, rationale, scope and practical approaches to public involvement and engagement for SAIL and our related Population Data Science initiatives. Although there will be jurisdictional, cultural and organizational differences, we believe that the material covered in this paper will be of interest to other data focused enterprises across the world. Journal Article International Journal of Population Data Science 5 3 Swansea University 2399-4908 Public engagement, Data safe haven 24 8 2020 2020-08-24 10.23889/ijpds.v5i3.1371 COLLEGE NANME Medical School COLLEGE CODE MEDS Swansea University UKRI, ES/S007393/1 2021-03-23T11:29:14.4372605 2020-10-26T17:45:33.8272938 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Medicine Kerina Jones 0000-0001-8164-3718 1 Sharon Heys 2 Rachel Thompson 3 Lynsey Cross 4 David Ford 0000-0001-6551-721X 5 55517__18500__3cca847647d04fce839443627c6232ef.pdf 55517.VOR.pdf 2020-10-26T17:49:55.0060762 Output 538242 application/pdf Version of Record true Distributed under the terms of a Creative Commons Attribution 4.0 (CC-BY) License true eng https://creativecommons.org/licenses/by/4.0/
title	Public Involvement & Engagement in the work of a data safe haven: a case study of the SAIL Databank
spellingShingle	Public Involvement & Engagement in the work of a data safe haven: a case study of the SAIL Databank Kerina Jones Sharon Heys Rachel Thompson Lynsey Cross David Ford
title_short	Public Involvement & Engagement in the work of a data safe haven: a case study of the SAIL Databank
title_full	Public Involvement & Engagement in the work of a data safe haven: a case study of the SAIL Databank
title_fullStr	Public Involvement & Engagement in the work of a data safe haven: a case study of the SAIL Databank
title_full_unstemmed	Public Involvement & Engagement in the work of a data safe haven: a case study of the SAIL Databank
title_sort	Public Involvement & Engagement in the work of a data safe haven: a case study of the SAIL Databank
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author_id_fullname_str_mv	c13b3cd0a6f8cbac2e461b54b3cdd839_*_Kerina Jones 61f095d8f6942db1b4fd65e2053091f5__Sharon Heys 5d2bdee781fad5d610c2d0d19a724c40__Rachel Thompson edebc5052d8edf25a5c57c8262e0c554__Lynsey Cross 52fc0c473b0da1b7218d87f9fc68a3e6_**_David Ford
author	Kerina Jones Sharon Heys Rachel Thompson Lynsey Cross David Ford
author2	Kerina Jones Sharon Heys Rachel Thompson Lynsey Cross David Ford
format	Journal article
container_title	International Journal of Population Data Science
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publishDate	2020
institution	Swansea University
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description	Background: The SAIL Databank is a data safe haven established in 2007 at Swansea University (Wales). It was set up to create new opportunities for research using routinely-collected health and other public service datasets in linkable anonymised form. SAIL forms the bedrock of other Population Data Science initiatives made possible by the data and safe haven environment. Aim: The aim of this paper is to provide an overview of public involvement and engagement in connection with the SAIL Databank and related Population Data Science initiatives. Approach: We have a public involvement and engagement policy for SAIL in the context of Population Data Science. We established a Consumer Panel to provide advice on the work of SAIL and associated initiatives, including on proposed uses of SAIL data. We reviewed the topics discussed and provide examples of advice to researchers. We carried out a survey with members on their experiences of being on the Panel and their perceptions of the work of SAIL. We have a programme of wider public engagement and provide illustrations of this work. Discussion: We summarise what this paper adds and some lessons learned. In the rapidly developing area of Population Data Science it is important that people feel welcome, that they are encouraged to ask questions and are provided with digestible information and adequate consideration time. Citizens have provided us with valuable anticipated and unanticipated opinions and novel viewpoints. We seek to take a pragmatic approach, prioritising the communication modes that allow maximum public input commensurate with the purpose of the activity. Conclusion: This paper has set out our policy, rationale, scope and practical approaches to public involvement and engagement for SAIL and our related Population Data Science initiatives. Although there will be jurisdictional, cultural and organizational differences, we believe that the material covered in this paper will be of interest to other data focused enterprises across the world.
published_date	2020-08-24T08:02:13Z
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Public Involvement & Engagement in the work of a data safe haven: a case study of the SAIL Databank

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