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Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study / Helen Daniels, Kerina Jones, Sharon Heys, David Ford

Journal of Medical Internet Research, Volume: 23, Issue: 9, Start page: e15739

Swansea University Authors: Helen Daniels, Kerina Jones, David Ford

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DOI (Published version): 10.2196/15739

Abstract

Background: Advancing the use of genomic data with routinely collected health data holds great promise for health care andresearch. Increasing the use of these data is a high priority to understand and address the causes of disease.Objective: This study aims to provide an outline of the use of genom...

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Published in: Journal of Medical Internet Research
ISSN: 1438-8871
Published: JMIR Publications Inc. 2021
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Increasing the use of these data is a high priority to understand and address the causes of disease.Objective: This study aims to provide an outline of the use of genomic data alongside routinely collected data in health researchto date. As this field prepares to move forward, it is important to take stock of the current state of play in order to highlight newavenues for development, identify challenges, and ensure that adequate data governance models are in place for safe and sociallyacceptable progress.Methods: We conducted a literature review to draw information from past studies that have used genomic and routinely collecteddata and conducted interviews with individuals who use these data for health research. We collected data on the following: therationale of using genomic data in conjunction with routinely collected data, types of genomic and routinely collected data used,data sources, project approvals, governance and access models, and challenges encountered.Results: The main purpose of using genomic and routinely collected data was to conduct genome-wide and phenome-wideassociation studies. Routine data sources included electronic health records, disease and death registries, health insurance systems,and deprivation indices. The types of genomic data included polygenic risk scores, single nucleotide polymorphisms, and measuresof genetic activity, and biobanks generally provided these data. Although the literature search showed that biobanks released datato researchers, the case studies revealed a growing tendency for use within a data safe haven. Challenges of working with thesedata revolved around data collection, data storage, technical, and data privacy issues.Conclusions: Using genomic and routinely collected data holds great promise for progressing health research. Several challengesare involved, particularly in terms of privacy. 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spelling 2021-09-28T17:48:16.2837277 v2 53732 2020-03-04 Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study a054902cb884be2476d0f097f0016294 0000-0001-8899-0333 Helen Daniels Helen Daniels true false c13b3cd0a6f8cbac2e461b54b3cdd839 0000-0001-8164-3718 Kerina Jones Kerina Jones true false 52fc0c473b0da1b7218d87f9fc68a3e6 0000-0001-6551-721X David Ford David Ford true false 2020-03-04 HDAT Background: Advancing the use of genomic data with routinely collected health data holds great promise for health care andresearch. Increasing the use of these data is a high priority to understand and address the causes of disease.Objective: This study aims to provide an outline of the use of genomic data alongside routinely collected data in health researchto date. As this field prepares to move forward, it is important to take stock of the current state of play in order to highlight newavenues for development, identify challenges, and ensure that adequate data governance models are in place for safe and sociallyacceptable progress.Methods: We conducted a literature review to draw information from past studies that have used genomic and routinely collecteddata and conducted interviews with individuals who use these data for health research. We collected data on the following: therationale of using genomic data in conjunction with routinely collected data, types of genomic and routinely collected data used,data sources, project approvals, governance and access models, and challenges encountered.Results: The main purpose of using genomic and routinely collected data was to conduct genome-wide and phenome-wideassociation studies. Routine data sources included electronic health records, disease and death registries, health insurance systems,and deprivation indices. The types of genomic data included polygenic risk scores, single nucleotide polymorphisms, and measuresof genetic activity, and biobanks generally provided these data. Although the literature search showed that biobanks released datato researchers, the case studies revealed a growing tendency for use within a data safe haven. Challenges of working with thesedata revolved around data collection, data storage, technical, and data privacy issues.Conclusions: Using genomic and routinely collected data holds great promise for progressing health research. Several challengesare involved, particularly in terms of privacy. Overcoming these barriers will ensure that the use of these data to progress healthresearch can be exploited to its full potential. Journal Article Journal of Medical Internet Research 23 9 e15739 JMIR Publications Inc. 1438-8871 24 9 2021 2021-09-24 10.2196/15739 http://dx.doi.org/10.2196/15739 COLLEGE NANME Health Data Science COLLEGE CODE HDAT Swansea University External research funder(s) paid the OA fee (includes OA grants disbursed by the Library) UKRI MC_PC_16035 2021-09-28T17:48:16.2837277 2020-03-04T13:57:12.2234014 Swansea University Medical School Medicine Helen Daniels 0000-0001-8899-0333 1 Kerina Jones 0000-0001-8164-3718 2 Sharon Heys 3 David Ford 0000-0001-6551-721X 4 53732__21045__f538bd7b1cde4090834c13152dc71723.pdf 53732.VOR.document.pdf 2021-09-28T17:46:42.3199568 Output 200418 application/pdf Version of Record true This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. true eng https://creativecommons.org/licenses/by/4.0/
title Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study
spellingShingle Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study
Helen, Daniels
Kerina, Jones
David, Ford
title_short Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study
title_full Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study
title_fullStr Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study
title_full_unstemmed Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study
title_sort Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study
author_id_str_mv a054902cb884be2476d0f097f0016294
c13b3cd0a6f8cbac2e461b54b3cdd839
52fc0c473b0da1b7218d87f9fc68a3e6
author_id_fullname_str_mv a054902cb884be2476d0f097f0016294_***_Helen, Daniels
c13b3cd0a6f8cbac2e461b54b3cdd839_***_Kerina, Jones
52fc0c473b0da1b7218d87f9fc68a3e6_***_David, Ford
author Helen, Daniels
Kerina, Jones
David, Ford
author2 Helen Daniels
Kerina Jones
Sharon Heys
David Ford
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college_str Swansea University Medical School
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url http://dx.doi.org/10.2196/15739
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description Background: Advancing the use of genomic data with routinely collected health data holds great promise for health care andresearch. Increasing the use of these data is a high priority to understand and address the causes of disease.Objective: This study aims to provide an outline of the use of genomic data alongside routinely collected data in health researchto date. As this field prepares to move forward, it is important to take stock of the current state of play in order to highlight newavenues for development, identify challenges, and ensure that adequate data governance models are in place for safe and sociallyacceptable progress.Methods: We conducted a literature review to draw information from past studies that have used genomic and routinely collecteddata and conducted interviews with individuals who use these data for health research. We collected data on the following: therationale of using genomic data in conjunction with routinely collected data, types of genomic and routinely collected data used,data sources, project approvals, governance and access models, and challenges encountered.Results: The main purpose of using genomic and routinely collected data was to conduct genome-wide and phenome-wideassociation studies. Routine data sources included electronic health records, disease and death registries, health insurance systems,and deprivation indices. The types of genomic data included polygenic risk scores, single nucleotide polymorphisms, and measuresof genetic activity, and biobanks generally provided these data. Although the literature search showed that biobanks released datato researchers, the case studies revealed a growing tendency for use within a data safe haven. Challenges of working with thesedata revolved around data collection, data storage, technical, and data privacy issues.Conclusions: Using genomic and routinely collected data holds great promise for progressing health research. Several challengesare involved, particularly in terms of privacy. Overcoming these barriers will ensure that the use of these data to progress healthresearch can be exploited to its full potential.
published_date 2021-09-24T04:09:54Z
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