Sharing health data: How ethnic subgroups feel about giving away their information.
In Canada, there is a lack of specific health data when it comes to ethnic communities. The country is rich in ethnic diversity, yet the lack of data from these communities leads to ethnicity-related inequalities in healthcare systems, which can be quite problematic.
The importance of understanding why this is the case and how best to assist and encourage people from ethnic communities to contribute to research using administrative health data, has led a research team from Calgary to engage with community members in an attempt to find a mutually agreeable way forward.
In their study ‘Color coded health data: factors related to willingness to share health information in South Asian community members in Canada’ published in the International Journal of Population Data Science (IJPDS), the team have uncovered some interesting insights and pointers for other researchers that can help facilitate data collection in other parts of the world.
Iffat Naeem from the Department of Community Health Sciences at the University of Calgary said “Researchers need to be culturally sensitive and respectfully engaged with the community they are studying, and it needs to happen as soon as possible. Ethnic subgroups in Canada and in particular South Asians in Canada have concerns about participating in health data research, and researchers everywhere should be listening.”
The study highlights that health researchers should be working towards partnerships with such communities. They should help to empower people with knowledge of the process of sharing their personal information involves, and the positive outcome of doing so for the whole community.
Based on feedback from interviews with participants, three different levels of trust need to be considered:
- Trust at the level of initial data processing (such as the credibility of the researcher)
- Trust at the community level (or accessibility of information sharing)
- Trust at the individual level (what type of information is being requested?)
Overall, we found that ethno cultural and socio-ecological aspects of health should be emphasized, like building a culturally sensitive consent process, or providing face-to-face interviews for those with technology barriers. With the growing need for large-scale data, it is important that data is available for ethno cultural communities to push forward the understanding of health disparities.
Tanvir Chowdhury, Associate Professor, Community Health Sciences, University of Calgary, Canada.
Naeem, I., Aroua, M., Chowdhury, N., Saini, V., Quan, H. and Turin, T. C. (2023) “Color Coded Health Data: Factors related to willingness to share health information in South Asian community members in Canada”, International Journal of Population Data Science, 8(1). doi: 10.23889/ijpds.v8i1.2134.