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

Kerina Jones Orcid Logo, Sharon Heys, Rachel Thompson, Lynsey Cross, David Ford Orcid Logo

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

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

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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
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URI: https://cronfa.swan.ac.uk/Record/cronfa55517
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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. 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.</abstract><type>Journal Article</type><journal>International Journal of Population Data Science</journal><volume>5</volume><journalNumber>3</journalNumber><paginationStart/><paginationEnd/><publisher>Swansea University</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint/><issnElectronic>2399-4908</issnElectronic><keywords>Public engagement, Data safe haven</keywords><publishedDay>24</publishedDay><publishedMonth>8</publishedMonth><publishedYear>2020</publishedYear><publishedDate>2020-08-24</publishedDate><doi>10.23889/ijpds.v5i3.1371</doi><url/><notes/><college>COLLEGE NANME</college><department>Health Data Science</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>HDAT</DepartmentCode><institution>Swansea University</institution><apcterm/><funders>UKRI, ES/S007393/1</funders><lastEdited>2021-03-23T11:29:14.4372605</lastEdited><Created>2020-10-26T17:45:33.8272938</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">Swansea University Medical School - Medicine</level></path><authors><author><firstname>Kerina</firstname><surname>Jones</surname><orcid>0000-0001-8164-3718</orcid><order>1</order></author><author><firstname>Sharon</firstname><surname>Heys</surname><order>2</order></author><author><firstname>Rachel</firstname><surname>Thompson</surname><order>3</order></author><author><firstname>Lynsey</firstname><surname>Cross</surname><order>4</order></author><author><firstname>David</firstname><surname>Ford</surname><orcid>0000-0001-6551-721X</orcid><order>5</order></author></authors><documents><document><filename>55517__18500__3cca847647d04fce839443627c6232ef.pdf</filename><originalFilename>55517.VOR.pdf</originalFilename><uploaded>2020-10-26T17:49:55.0060762</uploaded><type>Output</type><contentLength>538242</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>Distributed under the terms of a Creative Commons Attribution 4.0 (CC-BY) License</documentNotes><copyrightCorrect>true</copyrightCorrect><language>eng</language><licence>https://creativecommons.org/licenses/by/4.0/</licence></document></documents><OutputDurs/></rfc1807>
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 HDAT 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 Health Data Science COLLEGE CODE HDAT 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
author_id_str_mv c13b3cd0a6f8cbac2e461b54b3cdd839
61f095d8f6942db1b4fd65e2053091f5
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edebc5052d8edf25a5c57c8262e0c554
52fc0c473b0da1b7218d87f9fc68a3e6
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
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container_title International Journal of Population Data Science
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publishDate 2020
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doi_str_mv 10.23889/ijpds.v5i3.1371
publisher Swansea University
college_str Faculty of Medicine, Health and Life Sciences
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hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Medicine{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Medicine
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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 2020-08-24T04:09:47Z
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