Color coded health data: Factors related to willingness to share health information in South Asian community members in Canada
Abstract
We employed a qualitative descriptive approach to better understand willingness to share health information by South Asian participants in Edmonton, AB and operated through a lens that considered the cultural and sociodemographic aspect of ethnocultural communities. 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. 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.
Notes
Community organizations: n/a
Integration timeline: not defined
Key populations: South Asians in Edmonton
Key recommendations:
Engage with ethnocultural communities when building lasting information-sharing partnerships
Develop frameworks that can assist researchers in developing and documenting partnerships with ethnocultural communities.
Explore and expand the process of rapport and relationship building with communities about the building of an information sharing partnership
Ensure documentation of this process, along with a systematic way of collecting the community perspectives on barriers and facilitators to sharing information.
Location: Edmonton, AB
Open access: No
Future research / gaps identified:
Key findings:
Participants reported that when the process of sharing information was made easy, they were more likely to share.
Generally, participants were hesitant to share information that was overly specific to them
If the stakeholder requesting the information was credible, the participant felt safe to share their information
Overall, participants expressed an altruistic attitude towards sharing, where they were more willing to share if it meant that the sharing process could benefit the community.
Anonymisation was important for participants, especially when sharing information that was potentially sensitive.
Participants reported that more communication with the community regarding health issues or the research that is being conducted and the expected benefits of the research will aid in more information sharing amongst community members.