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Linking pre- and post-adoption records for research in anonymised form in a data safe haven: / Kerina Jones, Sharon Heys, Rachel Thompson, Lucy Griffiths, Rhodri Johnson, Alexandra Lee, David Ford, Karen Broadhurst

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

Swansea University Authors: Kerina Jones, Sharon Heys, Rachel Thompson, Lucy Griffiths, Rhodri Johnson, Alexandra Lee, David Ford

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Abstract

Introduction: The long-term health and wellbeing of adoptees is under-researched. One reason for this has been limited data accessibility regarding the adoption process, and another is a practice common in some UK jurisdictions of changing the NHS number (or equivalent) at adoption, as part of creat...

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Published in: International Journal of Population Data Science
ISSN: 2399-4908
Published: Swansea University 2020
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One reason for this has been limited data accessibility regarding the adoption process, and another is a practice common in some UK jurisdictions of changing the NHS number (or equivalent) at adoption, as part of creating the new identity. The SAIL Databank holds data from the Wales Children and Family Court Advisory and Support Service (Cafcass Cymru), together with children&#x2019;s social care data, and can link these with routine health and administrative data in anonymised form. However, because the linkage key at SAIL is based on an encryption of the NHS number, working with pre- and post-adoption records for longitudinal research remains a major challenge. We set out to explore the legal implications of, and social support for, linking these records for use in anonymised form for longitudinal research. Methods: We reviewed the main legislation and regulations governing the use of data about adoptees in England and Wales. We gauged support for a social licence in Wales by carrying out interviews with individuals who had been involved in the adoptions process, and by engaging with general public groups for their views. We drew out the main emerging themes and, in combination with the review, propose a way forward. Results: The legal review indicated that there are provisions in the Family Procedure Rules (England and Wales) and the General Data Protection Regulation that can be relied upon for the lawful processing of adoption data into anonymised form for research. The main points of concern about linking pre- and post-adoption records were privacy, data security, the need to limit the number of organisations involved in data sharing, and re-identification risk. The over-riding message was favourable with longitudinal research seen as strongly beneficial. Conclusion: This study has indicated that in Wales, there is no legal impediment, nor major objection from individuals involved in the adoptions process, as well as the general public for the use of adoption data in anonymised form, in a data safe haven. This includes the linkage of pre- and post&#x2011;adoption records to enable novel longitudinal research to take place. The provisos were that robust safeguards must be in place, and that the research should aim to benefit adoptees and to improve policy and practice. We conclude that it is reasonable to proceed with caution to develop practical ways to link pre- and post&#x2011;adoption records in a data safe haven.</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, legal issues, adoptions data</keywords><publishedDay>23</publishedDay><publishedMonth>10</publishedMonth><publishedYear>2020</publishedYear><publishedDate>2020-10-23</publishedDate><doi>10.23889/ijpds.v5i3.1370</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, ESRC ES/S007393/1</funders><lastEdited>2021-09-29T12:01:39.8529222</lastEdited><Created>2020-10-26T16:17:48.6817852</Created><path><level id="1">Swansea University Medical School</level><level id="2">Swansea University Medical School</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><orcid>0000-0001-6332-545X</orcid><order>3</order></author><author><firstname>Kerina</firstname><surname>Jones</surname><order>4</order></author><author><firstname>Lucy</firstname><surname>Griffiths</surname><orcid>0000-0001-9230-624X</orcid><order>5</order></author><author><firstname>Rhodri</firstname><surname>Johnson</surname><orcid/><order>6</order></author><author><firstname>Alexandra</firstname><surname>Lee</surname><order>7</order></author><author><firstname>David</firstname><surname>Ford</surname><orcid>0000-0001-6551-721X</orcid><order>8</order></author><author><firstname>Karen</firstname><surname>Broadhurst</surname><order>9</order></author></authors><documents><document><filename>55516__18498__9214ef0f6db9472aa2d78446cc78d16f.pdf</filename><originalFilename>55516.VOR.pdf</originalFilename><uploaded>2020-10-26T16:23:24.8143249</uploaded><type>Output</type><contentLength>341225</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/deed.en</licence></document></documents><OutputDurs/></rfc1807>
spelling 2021-09-29T12:01:39.8529222 v2 55516 2020-10-26 Linking pre- and post-adoption records for research in anonymised form in a data safe haven: c13b3cd0a6f8cbac2e461b54b3cdd839 0000-0001-8164-3718 Kerina Jones Kerina Jones true false 61f095d8f6942db1b4fd65e2053091f5 Sharon Heys Sharon Heys true false 5d2bdee781fad5d610c2d0d19a724c40 0000-0001-6332-545X Rachel Thompson Rachel Thompson true false e35ea6ea4b429e812ef204b048131d93 0000-0001-9230-624X Lucy Griffiths Lucy Griffiths true false 5f97fd65ef8cf66db750f645f115454c Rhodri Johnson Rhodri Johnson true false 7c6dc217555b0fea264ff0dd7d0aa374 Alexandra Lee Alexandra Lee true false 52fc0c473b0da1b7218d87f9fc68a3e6 0000-0001-6551-721X David Ford David Ford true false 2020-10-26 HDAT Introduction: The long-term health and wellbeing of adoptees is under-researched. One reason for this has been limited data accessibility regarding the adoption process, and another is a practice common in some UK jurisdictions of changing the NHS number (or equivalent) at adoption, as part of creating the new identity. The SAIL Databank holds data from the Wales Children and Family Court Advisory and Support Service (Cafcass Cymru), together with children’s social care data, and can link these with routine health and administrative data in anonymised form. However, because the linkage key at SAIL is based on an encryption of the NHS number, working with pre- and post-adoption records for longitudinal research remains a major challenge. We set out to explore the legal implications of, and social support for, linking these records for use in anonymised form for longitudinal research. Methods: We reviewed the main legislation and regulations governing the use of data about adoptees in England and Wales. We gauged support for a social licence in Wales by carrying out interviews with individuals who had been involved in the adoptions process, and by engaging with general public groups for their views. We drew out the main emerging themes and, in combination with the review, propose a way forward. Results: The legal review indicated that there are provisions in the Family Procedure Rules (England and Wales) and the General Data Protection Regulation that can be relied upon for the lawful processing of adoption data into anonymised form for research. The main points of concern about linking pre- and post-adoption records were privacy, data security, the need to limit the number of organisations involved in data sharing, and re-identification risk. The over-riding message was favourable with longitudinal research seen as strongly beneficial. Conclusion: This study has indicated that in Wales, there is no legal impediment, nor major objection from individuals involved in the adoptions process, as well as the general public for the use of adoption data in anonymised form, in a data safe haven. This includes the linkage of pre- and post‑adoption records to enable novel longitudinal research to take place. The provisos were that robust safeguards must be in place, and that the research should aim to benefit adoptees and to improve policy and practice. We conclude that it is reasonable to proceed with caution to develop practical ways to link pre- and post‑adoption records in a data safe haven. Journal Article International Journal of Population Data Science 5 3 Swansea University 2399-4908 Public engagement, legal issues, adoptions data 23 10 2020 2020-10-23 10.23889/ijpds.v5i3.1370 COLLEGE NANME Health Data Science COLLEGE CODE HDAT Swansea University UKRI, ESRC ES/S007393/1 2021-09-29T12:01:39.8529222 2020-10-26T16:17:48.6817852 Swansea University Medical School Swansea University Medical School Kerina Jones 0000-0001-8164-3718 1 Sharon Heys 2 Rachel Thompson 0000-0001-6332-545X 3 Kerina Jones 4 Lucy Griffiths 0000-0001-9230-624X 5 Rhodri Johnson 6 Alexandra Lee 7 David Ford 0000-0001-6551-721X 8 Karen Broadhurst 9 55516__18498__9214ef0f6db9472aa2d78446cc78d16f.pdf 55516.VOR.pdf 2020-10-26T16:23:24.8143249 Output 341225 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/deed.en
title Linking pre- and post-adoption records for research in anonymised form in a data safe haven:
spellingShingle Linking pre- and post-adoption records for research in anonymised form in a data safe haven:
Kerina, Jones
Sharon, Heys
Rachel, Thompson
Lucy, Griffiths
Rhodri, Johnson
Alexandra, Lee
David, Ford
title_short Linking pre- and post-adoption records for research in anonymised form in a data safe haven:
title_full Linking pre- and post-adoption records for research in anonymised form in a data safe haven:
title_fullStr Linking pre- and post-adoption records for research in anonymised form in a data safe haven:
title_full_unstemmed Linking pre- and post-adoption records for research in anonymised form in a data safe haven:
title_sort Linking pre- and post-adoption records for research in anonymised form in a data safe haven:
author_id_str_mv c13b3cd0a6f8cbac2e461b54b3cdd839
61f095d8f6942db1b4fd65e2053091f5
5d2bdee781fad5d610c2d0d19a724c40
e35ea6ea4b429e812ef204b048131d93
5f97fd65ef8cf66db750f645f115454c
7c6dc217555b0fea264ff0dd7d0aa374
52fc0c473b0da1b7218d87f9fc68a3e6
author_id_fullname_str_mv c13b3cd0a6f8cbac2e461b54b3cdd839_***_Kerina, Jones
61f095d8f6942db1b4fd65e2053091f5_***_Sharon, Heys
5d2bdee781fad5d610c2d0d19a724c40_***_Rachel, Thompson
e35ea6ea4b429e812ef204b048131d93_***_Lucy, Griffiths
5f97fd65ef8cf66db750f645f115454c_***_Rhodri, Johnson
7c6dc217555b0fea264ff0dd7d0aa374_***_Alexandra, Lee
52fc0c473b0da1b7218d87f9fc68a3e6_***_David, Ford
author Kerina, Jones
Sharon, Heys
Rachel, Thompson
Lucy, Griffiths
Rhodri, Johnson
Alexandra, Lee
David, Ford
author2 Kerina Jones
Sharon Heys
Rachel Thompson
Kerina Jones
Lucy Griffiths
Rhodri Johnson
Alexandra Lee
David Ford
Karen Broadhurst
format Journal article
container_title International Journal of Population Data Science
container_volume 5
container_issue 3
publishDate 2020
institution Swansea University
issn 2399-4908
doi_str_mv 10.23889/ijpds.v5i3.1370
publisher Swansea University
college_str Swansea University Medical School
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hierarchy_top_title Swansea University Medical School
hierarchy_parent_id swanseauniversitymedicalschool
hierarchy_parent_title Swansea University Medical School
department_str Swansea University Medical School{{{_:::_}}}Swansea University Medical School{{{_:::_}}}Swansea University Medical School
document_store_str 1
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description Introduction: The long-term health and wellbeing of adoptees is under-researched. One reason for this has been limited data accessibility regarding the adoption process, and another is a practice common in some UK jurisdictions of changing the NHS number (or equivalent) at adoption, as part of creating the new identity. The SAIL Databank holds data from the Wales Children and Family Court Advisory and Support Service (Cafcass Cymru), together with children’s social care data, and can link these with routine health and administrative data in anonymised form. However, because the linkage key at SAIL is based on an encryption of the NHS number, working with pre- and post-adoption records for longitudinal research remains a major challenge. We set out to explore the legal implications of, and social support for, linking these records for use in anonymised form for longitudinal research. Methods: We reviewed the main legislation and regulations governing the use of data about adoptees in England and Wales. We gauged support for a social licence in Wales by carrying out interviews with individuals who had been involved in the adoptions process, and by engaging with general public groups for their views. We drew out the main emerging themes and, in combination with the review, propose a way forward. Results: The legal review indicated that there are provisions in the Family Procedure Rules (England and Wales) and the General Data Protection Regulation that can be relied upon for the lawful processing of adoption data into anonymised form for research. The main points of concern about linking pre- and post-adoption records were privacy, data security, the need to limit the number of organisations involved in data sharing, and re-identification risk. The over-riding message was favourable with longitudinal research seen as strongly beneficial. Conclusion: This study has indicated that in Wales, there is no legal impediment, nor major objection from individuals involved in the adoptions process, as well as the general public for the use of adoption data in anonymised form, in a data safe haven. This includes the linkage of pre- and post‑adoption records to enable novel longitudinal research to take place. The provisos were that robust safeguards must be in place, and that the research should aim to benefit adoptees and to improve policy and practice. We conclude that it is reasonable to proceed with caution to develop practical ways to link pre- and post‑adoption records in a data safe haven.
published_date 2020-10-23T04:14:33Z
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