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Community-based Health Data Cooperatives Towards Improving the Immigrant Community Health: A Scoping Review to Inform

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Health Data Cooperatives (HDCs) empower individuals by enabling them to own and manage their health data. This review explores HDC literature, focusing on data ownership, security, and infrastructure for community health.

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Area of Science:

  • Health Informatics
  • Public Health
  • Data Governance

Background:

  • Limited national data on immigrant health and service utilization hinders wellness initiatives.
  • Technological advancements increase data collection and storage, creating data silos.
  • The Health Data Cooperative (HDC) model empowers members as data owners and decision-makers for health information sharing.

Purpose of the Study:

  • To scope the existing literature on the Health Data Cooperative (HDC) model.
  • To identify and describe the types of literature available on HDCs.
  • To delineate key themes, benefits, and challenges associated with HDCs.

Main Methods:

  • A scoping review was conducted using the Arskey and O'Malley five-stage framework.
  • Literature searches included databases, grey literature, and internet searches for "health data cooperative" and related terms.
  • Thematic analysis was employed to synthesize collated information into comprehensive themes.

Main Results:

  • The review identified 22 database/grey literature records and 13 internet search records.
  • Key stakeholder themes emerged: data ownership, data security, and data flow/infrastructure.
  • The findings provide foundational insights into the HDC model.

Conclusions:

  • This study offers an initial understanding of the HDC model for potential establishment in immigrant communities.
  • The research highlights the importance of data ownership, security, and infrastructure in community health initiatives.
  • Further exploration of the HDC model is recommended for enhancing immigrant health and wellness.