Developing a comprehensive database with sensitive health information: A profile of people living with HIV in Newfoundland and Labrador, Canada
Introduction Developing a comprehensive cohort of people living with HIV (PLHIV) to help improve healthcare has long been the vision of researchers, clinicians and decision makers. The development of this kind of database is challenging and requires strict adherence to privacy and confidentiality po...
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Swansea University
2020
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ftdoajarticles:oai:doaj.org/article:920f0766ff7f4c9bb240a3a430ac2ea2 2023-05-15T17:21:55+02:00 Developing a comprehensive database with sensitive health information: A profile of people living with HIV in Newfoundland and Labrador, Canada Shabnam Asghari Sarah Boyd John Knight Jillian Blackmore Oliver Hurley Jill Allison Laura Gilbert Jeff Dowden Phil Lundrigan 2020-02-01T00:00:00Z https://doi.org/10.23889/ijpds.v5i1.1144 https://doaj.org/article/920f0766ff7f4c9bb240a3a430ac2ea2 EN eng Swansea University https://ijpds.org/article/view/1144 https://doaj.org/toc/2399-4908 doi:10.23889/ijpds.v5i1.1144 2399-4908 https://doaj.org/article/920f0766ff7f4c9bb240a3a430ac2ea2 International Journal of Population Data Science, Vol 5, Iss 1 (2020) Database development HIV Demography. Population. Vital events HB848-3697 article 2020 ftdoajarticles https://doi.org/10.23889/ijpds.v5i1.1144 2022-12-31T04:25:15Z Introduction Developing a comprehensive cohort of people living with HIV (PLHIV) to help improve healthcare has long been the vision of researchers, clinicians and decision makers. The development of this kind of database is challenging and requires strict adherence to privacy and confidentiality policies. We explored procedures, activities and events in database development. Objectives To understand processes of developing a database with sensitive health information in Newfoundland and Labrador (NL), and to investigate procedures and activities to develop the database within its environmental context. Methods A narrative case study was used to explain the challenges and procedures involved in developing a database for our population. The development of the PLHIV cohort in NL is provided as an example to demonstrate the complexity of the process. We linked three datasets that included patient-level data for PLHIV: 1. laboratory data; 2. HIV clinic data; 3. health administrative data, which allowed for the creation of a large database containing many variables describing the PLHIV cohort in the province. Results We developed a de-identified cohort of 251 PLHIV that contained 178 variables. Our case study showed database development is an iterative process. The main challenges were ensuring patient privacy and data confidentiality are not compromised and working with multi-custodian data. These challenges were addressed by establishing a data governance team. Conclusions It is important that policy be implemented to merge siloed data sources in order to provide researchers with accurate and complete data that is required to conduct sound and precise research with maximum benefits for treatment and policy-making to improve health outcomes. Article in Journal/Newspaper Newfoundland Directory of Open Access Journals: DOAJ Articles Newfoundland Canada International Journal of Population Data Science 5 1 |
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Directory of Open Access Journals: DOAJ Articles |
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English |
topic |
Database development HIV Demography. Population. Vital events HB848-3697 |
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Database development HIV Demography. Population. Vital events HB848-3697 Shabnam Asghari Sarah Boyd John Knight Jillian Blackmore Oliver Hurley Jill Allison Laura Gilbert Jeff Dowden Phil Lundrigan Developing a comprehensive database with sensitive health information: A profile of people living with HIV in Newfoundland and Labrador, Canada |
topic_facet |
Database development HIV Demography. Population. Vital events HB848-3697 |
description |
Introduction Developing a comprehensive cohort of people living with HIV (PLHIV) to help improve healthcare has long been the vision of researchers, clinicians and decision makers. The development of this kind of database is challenging and requires strict adherence to privacy and confidentiality policies. We explored procedures, activities and events in database development. Objectives To understand processes of developing a database with sensitive health information in Newfoundland and Labrador (NL), and to investigate procedures and activities to develop the database within its environmental context. Methods A narrative case study was used to explain the challenges and procedures involved in developing a database for our population. The development of the PLHIV cohort in NL is provided as an example to demonstrate the complexity of the process. We linked three datasets that included patient-level data for PLHIV: 1. laboratory data; 2. HIV clinic data; 3. health administrative data, which allowed for the creation of a large database containing many variables describing the PLHIV cohort in the province. Results We developed a de-identified cohort of 251 PLHIV that contained 178 variables. Our case study showed database development is an iterative process. The main challenges were ensuring patient privacy and data confidentiality are not compromised and working with multi-custodian data. These challenges were addressed by establishing a data governance team. Conclusions It is important that policy be implemented to merge siloed data sources in order to provide researchers with accurate and complete data that is required to conduct sound and precise research with maximum benefits for treatment and policy-making to improve health outcomes. |
format |
Article in Journal/Newspaper |
author |
Shabnam Asghari Sarah Boyd John Knight Jillian Blackmore Oliver Hurley Jill Allison Laura Gilbert Jeff Dowden Phil Lundrigan |
author_facet |
Shabnam Asghari Sarah Boyd John Knight Jillian Blackmore Oliver Hurley Jill Allison Laura Gilbert Jeff Dowden Phil Lundrigan |
author_sort |
Shabnam Asghari |
title |
Developing a comprehensive database with sensitive health information: A profile of people living with HIV in Newfoundland and Labrador, Canada |
title_short |
Developing a comprehensive database with sensitive health information: A profile of people living with HIV in Newfoundland and Labrador, Canada |
title_full |
Developing a comprehensive database with sensitive health information: A profile of people living with HIV in Newfoundland and Labrador, Canada |
title_fullStr |
Developing a comprehensive database with sensitive health information: A profile of people living with HIV in Newfoundland and Labrador, Canada |
title_full_unstemmed |
Developing a comprehensive database with sensitive health information: A profile of people living with HIV in Newfoundland and Labrador, Canada |
title_sort |
developing a comprehensive database with sensitive health information: a profile of people living with hiv in newfoundland and labrador, canada |
publisher |
Swansea University |
publishDate |
2020 |
url |
https://doi.org/10.23889/ijpds.v5i1.1144 https://doaj.org/article/920f0766ff7f4c9bb240a3a430ac2ea2 |
geographic |
Newfoundland Canada |
geographic_facet |
Newfoundland Canada |
genre |
Newfoundland |
genre_facet |
Newfoundland |
op_source |
International Journal of Population Data Science, Vol 5, Iss 1 (2020) |
op_relation |
https://ijpds.org/article/view/1144 https://doaj.org/toc/2399-4908 doi:10.23889/ijpds.v5i1.1144 2399-4908 https://doaj.org/article/920f0766ff7f4c9bb240a3a430ac2ea2 |
op_doi |
https://doi.org/10.23889/ijpds.v5i1.1144 |
container_title |
International Journal of Population Data Science |
container_volume |
5 |
container_issue |
1 |
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1766107925645885440 |