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 p...
Published in: | International Journal of Population Data Science |
---|---|
Main Authors: | , , , , , , , , |
Format: | Text |
Language: | English |
Published: |
Swansea University
2020
|
Subjects: | |
Online Access: | http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7473269/ http://www.ncbi.nlm.nih.gov/pubmed/32935052 https://doi.org/10.23889/ijpds.v5i1.1144 |
id |
ftpubmed:oai:pubmedcentral.nih.gov:7473269 |
---|---|
record_format |
openpolar |
spelling |
ftpubmed:oai:pubmedcentral.nih.gov:7473269 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 Asghari, S Boyd, S Knight, J Blackmore, J Hurley, O Allison, J Gilbert, L Dowden, J Lundrigan, P 2020-02-25 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7473269/ http://www.ncbi.nlm.nih.gov/pubmed/32935052 https://doi.org/10.23889/ijpds.v5i1.1144 en eng Swansea University http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7473269/ http://www.ncbi.nlm.nih.gov/pubmed/32935052 http://dx.doi.org/10.23889/ijpds.v5i1.1144 https://creativecommons.org/licences/by/4.0/ This work is licenced under a Creative Commons Attribution 4.0 International License. CC-BY Int J Popul Data Sci Population Data Science Text 2020 ftpubmed https://doi.org/10.23889/ijpds.v5i1.1144 2020-09-20T00:25:51Z 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. Text Newfoundland PubMed Central (PMC) Canada Newfoundland International Journal of Population Data Science 5 1 |
institution |
Open Polar |
collection |
PubMed Central (PMC) |
op_collection_id |
ftpubmed |
language |
English |
topic |
Population Data Science |
spellingShingle |
Population Data Science Asghari, S Boyd, S Knight, J Blackmore, J Hurley, O Allison, J Gilbert, L Dowden, J Lundrigan, P Developing a comprehensive database with sensitive health information: A profile of people living with HIV in Newfoundland and Labrador, Canada |
topic_facet |
Population Data Science |
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 |
Text |
author |
Asghari, S Boyd, S Knight, J Blackmore, J Hurley, O Allison, J Gilbert, L Dowden, J Lundrigan, P |
author_facet |
Asghari, S Boyd, S Knight, J Blackmore, J Hurley, O Allison, J Gilbert, L Dowden, J Lundrigan, P |
author_sort |
Asghari, S |
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 |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7473269/ http://www.ncbi.nlm.nih.gov/pubmed/32935052 https://doi.org/10.23889/ijpds.v5i1.1144 |
geographic |
Canada Newfoundland |
geographic_facet |
Canada Newfoundland |
genre |
Newfoundland |
genre_facet |
Newfoundland |
op_source |
Int J Popul Data Sci |
op_relation |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7473269/ http://www.ncbi.nlm.nih.gov/pubmed/32935052 http://dx.doi.org/10.23889/ijpds.v5i1.1144 |
op_rights |
https://creativecommons.org/licences/by/4.0/ This work is licenced under a Creative Commons Attribution 4.0 International License. |
op_rightsnorm |
CC-BY |
op_doi |
https://doi.org/10.23889/ijpds.v5i1.1144 |
container_title |
International Journal of Population Data Science |
container_volume |
5 |
container_issue |
1 |
_version_ |
1766107938589507584 |