Abstract
BackgroundIn 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).ObjectiveThis 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.MethodsWe 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.ResultsThrough 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.ConclusionsThe 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 wordscommunity health, health data, cooperative, and citizen data empowermen
Highlights
Canada is becoming an increasingly multicultural society, welcoming 250,000 immigrants each year, and composing 20% of the Canadian population [1]
The benefits and challenges of Health Data Cooperative (HDC) are discussed in the context of three unifying themes that have emerged from the data: 1) data ownership and control; 2) data security; and 3) data flow and infrastructure
After the removal of duplicates and a screening of the landing-page for the inclusion and exclusion criteria, thirteen webpages were included in the final analysis (Figure 2)
Summary
Canada is becoming an increasingly multicultural society, welcoming 250,000 immigrants each year, and composing 20% of the Canadian population [1]. Immigrant communities add to the economic, labor, and cultural diversity of Canada. As defined by Statistics Canada, is any person re-. Comprehensive national knowledge on immigrant health and health service utilisation is limited to allow for meaningful comparisons either within immigrant sub-groups or between immigrants and the native-born population [3]. 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. 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 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)
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