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Developing resources to facilitate public conversations about the use of linked address-based data for research

Nicola Firman Orcid Logo, Carol Dezateux Orcid Logo, Claire Newman, Harriet Baird, Rich Fry Orcid Logo, Gill Harper Orcid Logo, Lucy Griffiths Orcid Logo, Chris Dibben Orcid Logo, Alison Robert Orcid Logo, Alison Thomson

International Journal of Population Data Science, Volume: 11, Issue: 1

Swansea University Authors: Claire Newman, Rich Fry Orcid Logo, Lucy Griffiths Orcid Logo

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DOI (Published version): 10.23889/ijpds.v11i1.2998

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Introduction: Unique Property Reference Numbers (UPRNs) provide every addressable location in the United Kingdom (UK) with an identifier up to 12-digits in length, which are persistently unique, and are a mandated standard across the public sector in the UK. This standardisation means they are suite...

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Published in: International Journal of Population Data Science
ISSN: 2399-4908
Published: Swansea University 2026
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URI: https://cronfa.swan.ac.uk/Record/cronfa72070
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This standardisation means they are suited to be pseudonymised for data linkage for research, innovation and public benefit. While there have been many consultations exploring public trust in, and attitudes to, using patient data for research, none have explicitly considered their use for address-based linkage using UPRNs. Objectives: Our overarching aim is to build public trust in the uses of address-based data at household level. We set out to develop and test materials to facilitate conversations about the use of address-based data linkage at the household-level. In this case study, we describe the development of information materials and an initial dialogue to inform future public deliberation. Methods: In collaboration with designers and researchers, we generated a prototype website and shared this with experienced public advisory groups. Feedback from these groups informed development of a suite of resources, including slides and a facilitator's script to guide workshop discussions. These were supplemented by interactive, tactile tools designed to promote understanding of key concepts, and to encourage participants to ask questions relevant to their interests and concerns. We hosted two workshops with residents in a multi-ethnic, disadvantaged inner city locality to test and refine these materials. Results: Dialogue with residents emphasised the importance of accessibility, including clear descriptions of technical jargon, and the effectiveness of using less text-heavy materials and more interactive formats, particularly for participants for whom English is not their first language. Visual representations of people included in workshop materials need to reflect diversity in age, gender, ethnicity, and mobility to ensure resources are relatable. Adapting the approach to delivering information - whether through digital or physical formats - proved crucial in engaging with participants and meeting their diverse needs. Conclusions: We have created and tested with different public groups a toolkit to support conversations with academic and public audiences about research using address-linked patient data. The toolkit has been disseminated and made freely available for use by the research community.</abstract><type>Journal Article</type><journal>International Journal of Population Data Science</journal><volume>11</volume><journalNumber>1</journalNumber><paginationStart/><paginationEnd/><publisher>Swansea University</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint/><issnElectronic>2399-4908</issnElectronic><keywords>Patient and public involvement; public engagement; administrative data linkage; unique property reference numbers; primary care research; households; electronic health records</keywords><publishedDay>22</publishedDay><publishedMonth>1</publishedMonth><publishedYear>2026</publishedYear><publishedDate>2026-01-22</publishedDate><doi>10.23889/ijpds.v11i1.2998</doi><url/><notes/><college>COLLEGE NANME</college><department>Medical School</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>MEDS</DepartmentCode><institution>Swansea University</institution><apcterm>External research funder(s) paid the OA fee (includes OA grants disbursed by the Library)</apcterm><funders>This work was supported by Administrative Data Research UK,an Economic and Social Research Council investment (part ofUK Research and Innovation), grant number: ES/X00046X/1.This research was also supported by a grant from Barts Charityref: MGU0419.</funders><projectreference/><lastEdited>2026-06-12T11:09:41.6487998</lastEdited><Created>2026-06-12T10:59:32.0824738</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">Swansea University Medical School - Health Data Science</level></path><authors><author><firstname>Nicola</firstname><surname>Firman</surname><orcid>0000-0001-5213-5044</orcid><order>1</order></author><author><firstname>Carol</firstname><surname>Dezateux</surname><orcid>0000-0001-9787-6276</orcid><order>2</order></author><author><firstname>Claire</firstname><surname>Newman</surname><orcid/><order>3</order></author><author><firstname>Harriet</firstname><surname>Baird</surname><order>4</order></author><author><firstname>Rich</firstname><surname>Fry</surname><orcid>0000-0002-7968-6679</orcid><order>5</order></author><author><firstname>Gill</firstname><surname>Harper</surname><orcid>0000-0002-3492-2076</orcid><order>6</order></author><author><firstname>Lucy</firstname><surname>Griffiths</surname><orcid>0000-0001-9230-624X</orcid><order>7</order></author><author><firstname>Chris</firstname><surname>Dibben</surname><orcid>0000-0003-1769-3774</orcid><order>8</order></author><author><firstname>Alison</firstname><surname>Robert</surname><orcid>0009-0004-4101-9354</orcid><order>9</order></author><author><firstname>Alison</firstname><surname>Thomson</surname><order>10</order></author></authors><documents><document><filename>72070__36953__b9062e969180444c8e5fb1816f8cab4d.pdf</filename><originalFilename>72070.VoR.pdf</originalFilename><uploaded>2026-06-12T11:06:31.3074629</uploaded><type>Output</type><contentLength>2760798</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>© The Authors. 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spelling v2 72070 2026-06-12 Developing resources to facilitate public conversations about the use of linked address-based data for research a6e0845bcffe24baf1d2cc6233b489f1 Claire Newman Claire Newman true false d499b898d447b62c81b2c122598870e0 0000-0002-7968-6679 Rich Fry Rich Fry true false e35ea6ea4b429e812ef204b048131d93 0000-0001-9230-624X Lucy Griffiths Lucy Griffiths true false 2026-06-12 MEDS Introduction: Unique Property Reference Numbers (UPRNs) provide every addressable location in the United Kingdom (UK) with an identifier up to 12-digits in length, which are persistently unique, and are a mandated standard across the public sector in the UK. This standardisation means they are suited to be pseudonymised for data linkage for research, innovation and public benefit. While there have been many consultations exploring public trust in, and attitudes to, using patient data for research, none have explicitly considered their use for address-based linkage using UPRNs. Objectives: Our overarching aim is to build public trust in the uses of address-based data at household level. We set out to develop and test materials to facilitate conversations about the use of address-based data linkage at the household-level. In this case study, we describe the development of information materials and an initial dialogue to inform future public deliberation. Methods: In collaboration with designers and researchers, we generated a prototype website and shared this with experienced public advisory groups. Feedback from these groups informed development of a suite of resources, including slides and a facilitator's script to guide workshop discussions. These were supplemented by interactive, tactile tools designed to promote understanding of key concepts, and to encourage participants to ask questions relevant to their interests and concerns. We hosted two workshops with residents in a multi-ethnic, disadvantaged inner city locality to test and refine these materials. Results: Dialogue with residents emphasised the importance of accessibility, including clear descriptions of technical jargon, and the effectiveness of using less text-heavy materials and more interactive formats, particularly for participants for whom English is not their first language. Visual representations of people included in workshop materials need to reflect diversity in age, gender, ethnicity, and mobility to ensure resources are relatable. Adapting the approach to delivering information - whether through digital or physical formats - proved crucial in engaging with participants and meeting their diverse needs. Conclusions: We have created and tested with different public groups a toolkit to support conversations with academic and public audiences about research using address-linked patient data. The toolkit has been disseminated and made freely available for use by the research community. Journal Article International Journal of Population Data Science 11 1 Swansea University 2399-4908 Patient and public involvement; public engagement; administrative data linkage; unique property reference numbers; primary care research; households; electronic health records 22 1 2026 2026-01-22 10.23889/ijpds.v11i1.2998 COLLEGE NANME Medical School COLLEGE CODE MEDS Swansea University External research funder(s) paid the OA fee (includes OA grants disbursed by the Library) This work was supported by Administrative Data Research UK,an Economic and Social Research Council investment (part ofUK Research and Innovation), grant number: ES/X00046X/1.This research was also supported by a grant from Barts Charityref: MGU0419. 2026-06-12T11:09:41.6487998 2026-06-12T10:59:32.0824738 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Health Data Science Nicola Firman 0000-0001-5213-5044 1 Carol Dezateux 0000-0001-9787-6276 2 Claire Newman 3 Harriet Baird 4 Rich Fry 0000-0002-7968-6679 5 Gill Harper 0000-0002-3492-2076 6 Lucy Griffiths 0000-0001-9230-624X 7 Chris Dibben 0000-0003-1769-3774 8 Alison Robert 0009-0004-4101-9354 9 Alison Thomson 10 72070__36953__b9062e969180444c8e5fb1816f8cab4d.pdf 72070.VoR.pdf 2026-06-12T11:06:31.3074629 Output 2760798 application/pdf Version of Record true © The Authors. Open Access under CC BY 4.0. true eng https://creativecommons.org/licenses/by/4.0/deed.en
title Developing resources to facilitate public conversations about the use of linked address-based data for research
spellingShingle Developing resources to facilitate public conversations about the use of linked address-based data for research
Claire Newman
Rich Fry
Lucy Griffiths
title_short Developing resources to facilitate public conversations about the use of linked address-based data for research
title_full Developing resources to facilitate public conversations about the use of linked address-based data for research
title_fullStr Developing resources to facilitate public conversations about the use of linked address-based data for research
title_full_unstemmed Developing resources to facilitate public conversations about the use of linked address-based data for research
title_sort Developing resources to facilitate public conversations about the use of linked address-based data for research
author_id_str_mv a6e0845bcffe24baf1d2cc6233b489f1
d499b898d447b62c81b2c122598870e0
e35ea6ea4b429e812ef204b048131d93
author_id_fullname_str_mv a6e0845bcffe24baf1d2cc6233b489f1_***_Claire Newman
d499b898d447b62c81b2c122598870e0_***_Rich Fry
e35ea6ea4b429e812ef204b048131d93_***_Lucy Griffiths
author Claire Newman
Rich Fry
Lucy Griffiths
author2 Nicola Firman
Carol Dezateux
Claire Newman
Harriet Baird
Rich Fry
Gill Harper
Lucy Griffiths
Chris Dibben
Alison Robert
Alison Thomson
format Journal article
container_title International Journal of Population Data Science
container_volume 11
container_issue 1
publishDate 2026
institution Swansea University
issn 2399-4908
doi_str_mv 10.23889/ijpds.v11i1.2998
publisher Swansea University
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
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 - Health Data Science{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Health Data Science
document_store_str 1
active_str 0
description Introduction: Unique Property Reference Numbers (UPRNs) provide every addressable location in the United Kingdom (UK) with an identifier up to 12-digits in length, which are persistently unique, and are a mandated standard across the public sector in the UK. This standardisation means they are suited to be pseudonymised for data linkage for research, innovation and public benefit. While there have been many consultations exploring public trust in, and attitudes to, using patient data for research, none have explicitly considered their use for address-based linkage using UPRNs. Objectives: Our overarching aim is to build public trust in the uses of address-based data at household level. We set out to develop and test materials to facilitate conversations about the use of address-based data linkage at the household-level. In this case study, we describe the development of information materials and an initial dialogue to inform future public deliberation. Methods: In collaboration with designers and researchers, we generated a prototype website and shared this with experienced public advisory groups. Feedback from these groups informed development of a suite of resources, including slides and a facilitator's script to guide workshop discussions. These were supplemented by interactive, tactile tools designed to promote understanding of key concepts, and to encourage participants to ask questions relevant to their interests and concerns. We hosted two workshops with residents in a multi-ethnic, disadvantaged inner city locality to test and refine these materials. Results: Dialogue with residents emphasised the importance of accessibility, including clear descriptions of technical jargon, and the effectiveness of using less text-heavy materials and more interactive formats, particularly for participants for whom English is not their first language. Visual representations of people included in workshop materials need to reflect diversity in age, gender, ethnicity, and mobility to ensure resources are relatable. Adapting the approach to delivering information - whether through digital or physical formats - proved crucial in engaging with participants and meeting their diverse needs. Conclusions: We have created and tested with different public groups a toolkit to support conversations with academic and public audiences about research using address-linked patient data. The toolkit has been disseminated and made freely available for use by the research community.
published_date 2026-01-22T11:09:43Z
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