Color coded health data: factors related to willingness to share health information in South Asian community members in Canada

Abstract

Introduction: Data unavailability poses multiple challenges in many health fields, especially within ethnic subgroups in Canada, who may be hesitant to share their health data with researchers. Since health information availability is controlled by the participant, it is important to understand the willingness to share health information by an ethnic population to increase data availability within ethnocultural communities.

Methods: We employed a qualitative descriptive approach to better understand willingness to share health information by South Asian participants and operated through a lens that considered the cultural and sociodemographic aspect of ethnocultural communities. A total of 22 in-depth interviews were conducted between March and July 2020.

Results: The results of this study show that health researchers should aim to develop a mutually beneficial information-sharing partnership with communities, with an emphasis on the ethnocultural and socio-ecological aspects of health within populations.

Conclusion: The findings support the need for culturally sensitive and respectful engagement with the community, ethically sound research practices that make participants feel comfortable in sharing their information, and an easy sharing process to share health information feasibly.

Keywords: South Asian; health; immigrants; information; willingness.

Figure 1: Factors associated with sharing health information and their influence on trust at multiple levels