Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users
BackgroundBig 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 sam...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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JMIR Publications
2022-03-01
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| Series: | JMIR Human Factors |
| Online Access: | https://humanfactors.jmir.org/2022/1/e31021 |
| _version_ | 1797735243137941504 |
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| author | Zahra Almowil Shang-Ming Zhou Sinead Brophy Jodie Croxall |
| author_facet | Zahra Almowil Shang-Ming Zhou Sinead Brophy Jodie Croxall |
| author_sort | Zahra Almowil |
| collection | DOAJ |
| description |
BackgroundBig 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.
ObjectiveThis 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).
MethodsThis 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.
ResultsMost 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.
ConclusionsThe 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. |
| first_indexed | 2024-03-12T12:55:20Z |
| format | Article |
| id | doaj.art-18cbc85afd5341258994cc313000832e |
| institution | Directory Open Access Journal |
| issn | 2292-9495 |
| language | English |
| last_indexed | 2024-03-12T12:55:20Z |
| publishDate | 2022-03-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Human Factors |
| spelling | doaj.art-18cbc85afd5341258994cc313000832e2023-08-28T21:04:49ZengJMIR PublicationsJMIR Human Factors2292-94952022-03-0191e3102110.2196/31021Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of UsersZahra Almowilhttps://orcid.org/0000-0001-9942-0811Shang-Ming Zhouhttps://orcid.org/0000-0002-0719-9353Sinead Brophyhttps://orcid.org/0000-0001-7417-2858Jodie Croxallhttps://orcid.org/0000-0003-3277-7503 BackgroundBig 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. ObjectiveThis 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). MethodsThis 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. ResultsMost 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. ConclusionsThe 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.https://humanfactors.jmir.org/2022/1/e31021 |
| spellingShingle | Zahra Almowil Shang-Ming Zhou Sinead Brophy Jodie Croxall Concept Libraries for Repeatable and Reusable Research: Qualitative Study Exploring the Needs of Users JMIR Human Factors |
| title | 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_short | 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 |
| url | https://humanfactors.jmir.org/2022/1/e31021 |
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