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Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users

ZAHRA ALMOWIL, Shang-ming Zhou Orcid Logo, Sinead Brophy Orcid Logo, Jodie Croxall Orcid Logo

JMIR Human Factors, Volume: 9, Issue: 1, Start page: e31021

Swansea University Authors: ZAHRA ALMOWIL, Shang-ming Zhou Orcid Logo, Sinead Brophy Orcid Logo

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DOI (Published version): 10.2196/31021

Abstract

Background:Big data research in the field of health sciences is hindered by a lack of agreement on how to identify and define different conditions and their medications. This means that researchers and health professionals often have different phenotype definitions for the same condition. This lack...

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Published in: JMIR Human Factors
ISSN: 2292-9495
Published: JMIR Publications Inc. 2022
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This means that researchers and health professionals often have different phenotype definitions for the same condition. This lack of agreement makes it difficult to compare different study findings and hinders the ability to conduct repeatable and reusable research.Objective:This study aims to examine the requirements of various users, such as researchers, clinicians, machine learning experts, and managers, in the development of a data portal for phenotypes (a concept library).Methods:This was a qualitative study using interviews and focus group discussion. One-to-one interviews were conducted with researchers, clinicians, machine learning experts, and senior research managers in health data science (N=6) to explore their specific needs in the development of a concept library. In addition, a focus group discussion with researchers (N=14) working with the Secured Anonymized Information Linkage databank, a national eHealth data linkage infrastructure, was held to perform a SWOT (strengths, weaknesses, opportunities, and threats) analysis for the phenotyping system and the proposed concept library. The interviews and focus group discussion were transcribed verbatim, and 2 thematic analyses were performed.Results:Most of the participants thought that the prototype concept library would be a very helpful resource for conducting repeatable research, but they specified that many requirements are needed before its development. Although all the participants stated that they were aware of some existing concept libraries, most of them expressed negative perceptions about them. The participants mentioned several facilitators that would stimulate them to share their work and reuse the work of others, and they pointed out several barriers that could inhibit them from sharing their work and reusing the work of others. The participants suggested some developments that they would like to see to improve reproducible research output using routine data.Conclusions:The study indicated that most interviewees valued a concept library for phenotypes. However, only half of the participants felt that they would contribute by providing definitions for the concept library, and they reported many barriers regarding sharing their work on a publicly accessible platform. 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This is an open-access article distributed under the terms of the Creative Commons Attribution License</documentNotes><copyrightCorrect>true</copyrightCorrect><language>eng</language><licence>https://creativecommons.org/licenses/by/4.0/</licence></document></documents><OutputDurs/></rfc1807>
spelling 2022-11-08T17:03:39.4240229 v2 61655 2022-10-25 Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users 2fae47dc8567b17441bdbd5927c6ad28 ZAHRA ALMOWIL ZAHRA ALMOWIL true false 118578a62021ba8ef61398da0a8750da 0000-0002-0719-9353 Shang-ming Zhou Shang-ming Zhou true false 84f5661b35a729f55047f9e793d8798b 0000-0001-7417-2858 Sinead Brophy Sinead Brophy true false 2022-10-25 Background:Big data research in the field of health sciences is hindered by a lack of agreement on how to identify and define different conditions and their medications. This means that researchers and health professionals often have different phenotype definitions for the same condition. This lack of agreement makes it difficult to compare different study findings and hinders the ability to conduct repeatable and reusable research.Objective:This study aims to examine the requirements of various users, such as researchers, clinicians, machine learning experts, and managers, in the development of a data portal for phenotypes (a concept library).Methods:This was a qualitative study using interviews and focus group discussion. One-to-one interviews were conducted with researchers, clinicians, machine learning experts, and senior research managers in health data science (N=6) to explore their specific needs in the development of a concept library. In addition, a focus group discussion with researchers (N=14) working with the Secured Anonymized Information Linkage databank, a national eHealth data linkage infrastructure, was held to perform a SWOT (strengths, weaknesses, opportunities, and threats) analysis for the phenotyping system and the proposed concept library. The interviews and focus group discussion were transcribed verbatim, and 2 thematic analyses were performed.Results:Most of the participants thought that the prototype concept library would be a very helpful resource for conducting repeatable research, but they specified that many requirements are needed before its development. Although all the participants stated that they were aware of some existing concept libraries, most of them expressed negative perceptions about them. The participants mentioned several facilitators that would stimulate them to share their work and reuse the work of others, and they pointed out several barriers that could inhibit them from sharing their work and reusing the work of others. The participants suggested some developments that they would like to see to improve reproducible research output using routine data.Conclusions:The study indicated that most interviewees valued a concept library for phenotypes. However, only half of the participants felt that they would contribute by providing definitions for the concept library, and they reported many barriers regarding sharing their work on a publicly accessible platform. Analysis of interviews and the focus group discussion revealed that different stakeholders have different requirements, facilitators, barriers, and concerns about a prototype concept library. Journal Article JMIR Human Factors 9 1 e31021 JMIR Publications Inc. 2292-9495 electronic health records; record linkage; reproducible research; clinical codes; concept libraries 15 3 2022 2022-03-15 10.2196/31021 COLLEGE NANME COLLEGE CODE Swansea University This research was supported by the Kuwait Cultural Office in London, HDRUK (Health Data Research UK), and the National Centre for Population Health and Wellbeing. 2022-11-08T17:03:39.4240229 2022-10-25T11:33:57.7016358 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Medicine ZAHRA ALMOWIL 1 Shang-ming Zhou 0000-0002-0719-9353 2 Sinead Brophy 0000-0001-7417-2858 3 Jodie Croxall 0000-0003-3277-7503 4 61655__25698__e6857655387d455dabec56e653ffe493.pdf 61655.pdf 2022-11-08T17:02:34.3740240 Output 206776 application/pdf Version of Record true ┬ęZahra Almowil, Shang-Ming Zhou, Sinead Brophy, Jodie Croxall. This is an open-access article distributed under the terms of the Creative Commons Attribution License true eng https://creativecommons.org/licenses/by/4.0/
title Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users
spellingShingle Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users
ZAHRA ALMOWIL
Shang-ming Zhou
Sinead Brophy
title_short Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users
title_full Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users
title_fullStr Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users
title_full_unstemmed Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users
title_sort Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users
author_id_str_mv 2fae47dc8567b17441bdbd5927c6ad28
118578a62021ba8ef61398da0a8750da
84f5661b35a729f55047f9e793d8798b
author_id_fullname_str_mv 2fae47dc8567b17441bdbd5927c6ad28_***_ZAHRA ALMOWIL
118578a62021ba8ef61398da0a8750da_***_Shang-ming Zhou
84f5661b35a729f55047f9e793d8798b_***_Sinead Brophy
author ZAHRA ALMOWIL
Shang-ming Zhou
Sinead Brophy
author2 ZAHRA ALMOWIL
Shang-ming Zhou
Sinead Brophy
Jodie Croxall
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container_start_page e31021
publishDate 2022
institution Swansea University
issn 2292-9495
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college_str Faculty of Medicine, Health and Life Sciences
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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:Big data research in the field of health sciences is hindered by a lack of agreement on how to identify and define different conditions and their medications. This means that researchers and health professionals often have different phenotype definitions for the same condition. This lack of agreement makes it difficult to compare different study findings and hinders the ability to conduct repeatable and reusable research.Objective:This study aims to examine the requirements of various users, such as researchers, clinicians, machine learning experts, and managers, in the development of a data portal for phenotypes (a concept library).Methods:This was a qualitative study using interviews and focus group discussion. One-to-one interviews were conducted with researchers, clinicians, machine learning experts, and senior research managers in health data science (N=6) to explore their specific needs in the development of a concept library. In addition, a focus group discussion with researchers (N=14) working with the Secured Anonymized Information Linkage databank, a national eHealth data linkage infrastructure, was held to perform a SWOT (strengths, weaknesses, opportunities, and threats) analysis for the phenotyping system and the proposed concept library. The interviews and focus group discussion were transcribed verbatim, and 2 thematic analyses were performed.Results:Most of the participants thought that the prototype concept library would be a very helpful resource for conducting repeatable research, but they specified that many requirements are needed before its development. Although all the participants stated that they were aware of some existing concept libraries, most of them expressed negative perceptions about them. The participants mentioned several facilitators that would stimulate them to share their work and reuse the work of others, and they pointed out several barriers that could inhibit them from sharing their work and reusing the work of others. The participants suggested some developments that they would like to see to improve reproducible research output using routine data.Conclusions:The study indicated that most interviewees valued a concept library for phenotypes. However, only half of the participants felt that they would contribute by providing definitions for the concept library, and they reported many barriers regarding sharing their work on a publicly accessible platform. Analysis of interviews and the focus group discussion revealed that different stakeholders have different requirements, facilitators, barriers, and concerns about a prototype concept library.
published_date 2022-03-15T04:21:21Z
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