Color Coded Health Data: Factors related to willingness to share health information in South Asians
Background: Canada is becoming an increasing multicultural society welcoming individuals of various ethnicities. Ethnicity has become an established modifier of health in Canada, where ethnocultural communities face health disparities for multiple health outcomes. To understand these health disparities further, a call for high quality health data for ethnocultural communities has been made. 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. Objectives: The objectives of this study aimed to explore and synthesize factors associated with willingness to share health information via a rapid review of literature and qualitative interviews with (South Asian) SA participants, the largest ethnic group in Canada. Findings: Triangulating results from both the rapid review of literature and the qualitative interviews, revealed that factors associated with sharing health information operated at 3 different levels: 1) community level, 2) individual level, and 3) process level. These factors also operated through a lens that considered the cultural and sociodemographic aspect of ethnocultural communities. Conclusions: The results of this study reveal important factors associated with sharing health information for ethnocultural communities, and support the need for culturally sensitive and respectful engagement with the community, ethically sound research practices that make participants feel comfortable to share their information, and an easy and incentivised process to share their information feasibly. Future study should aim to understand and measure data-sharing partnerships between researchers and ethnocultural communities to maximize data availability for ethnic populations.
Health data, health research, ethnicity, trust
Naeem, I. (2020). Color Coded Health Data: Factors related to willingness to share health information in South Asians (Master's thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.