Community-based Health Data Cooperatives Towards Improving the Immigrant Community Health: A Scoping Review to Inform Policy and Practice.
Journal
International journal of population data science
ISSN: 2399-4908
Titre abrégé: Int J Popul Data Sci
Pays: Wales
ID NLM: 101737740
Informations de publication
Date de publication:
23 Jun 2020
23 Jun 2020
Historique:
entrez:
16
9
2020
pubmed:
17
9
2020
medline:
17
9
2020
Statut:
epublish
Résumé
In the case of immigrant health and wellness, data are the key limiting factor, where comprehensive national knowledge on immigrant health and health service utilisation is limited. New data and data silos are an inherent response to the increase in technology in the collection and storage of data. The Health Data Cooperative (HDC) model allows members to contribute, store, and manage their health-related information, and members are the rightful data owners and decision-makers to data sharing (e g. research communities, commercial entities, government bodies). This review attempts to scope the literature on HDC and fulfill the following objectives: 1) identify and describe the type of literature that is available on the HDC model; 2) describe the key themes related to HDCs; and 3) describe the benefits and challenges related to the HDC model. We conducted a scoping review using the five-stage framework outlined by Arskey and O'Malley to systematically map literature on HDCs using two search streams: 1) a database and grey literature search; and 2) an internet search. We included all English records that discussed health data cooperative and related key terms. We used a thematic analysis to collate information into comprehensive themes. Through a comprehensive screening process, we found 22 database and grey literature records, and 13 Internet search records. Three major themes that are important to stakeholders include data ownership, data security, and data flow and infrastructure. The results of this study are an informative first step to the study of the HDC model, or an establishment of a HDC in immigrant communities. community health, health data, cooperative, and citizen data empowermen.
Sections du résumé
BACKGROUND
BACKGROUND
In the case of immigrant health and wellness, data are the key limiting factor, where comprehensive national knowledge on immigrant health and health service utilisation is limited. New data and data silos are an inherent response to the increase in technology in the collection and storage of data. The Health Data Cooperative (HDC) model allows members to contribute, store, and manage their health-related information, and members are the rightful data owners and decision-makers to data sharing (e g. research communities, commercial entities, government bodies).
OBJECTIVE
OBJECTIVE
This review attempts to scope the literature on HDC and fulfill the following objectives: 1) identify and describe the type of literature that is available on the HDC model; 2) describe the key themes related to HDCs; and 3) describe the benefits and challenges related to the HDC model.
METHODS
METHODS
We conducted a scoping review using the five-stage framework outlined by Arskey and O'Malley to systematically map literature on HDCs using two search streams: 1) a database and grey literature search; and 2) an internet search. We included all English records that discussed health data cooperative and related key terms. We used a thematic analysis to collate information into comprehensive themes.
RESULTS
RESULTS
Through a comprehensive screening process, we found 22 database and grey literature records, and 13 Internet search records. Three major themes that are important to stakeholders include data ownership, data security, and data flow and infrastructure.
CONCLUSIONS
CONCLUSIONS
The results of this study are an informative first step to the study of the HDC model, or an establishment of a HDC in immigrant communities.
KEY WORDS
BACKGROUND
community health, health data, cooperative, and citizen data empowermen.
Identifiants
pubmed: 32935058
doi: 10.23889/ijpds.v5i1.1158
pii: 5:23
pmc: PMC7473268
doi:
Types de publication
Journal Article
Langues
eng
Pagination
1158Déclaration de conflit d'intérêts
Competing Interests: The authors declare they have no competing interests.
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