Community-Derived Research Agenda for Indigenous Peoples with Lived Hepatitis C Experience

Author: Quewezance L, King A

Theme: Social Science & Policy Research Year: 2015

“We have been researched to death. It is now time to research ourselves back to life” (Brant Castellano, quoting an Indigenous Elder, 2004).

Background: There is still uncertainty with respect to hepatitis C Epidemiology & Public Health Researchdemiology in terms of actual prevalence of chronic disease, as well as gender and ethnicity breakdown. But, Indigenous peoples in Canada are recognized as having significantly increased disease burden. Moreover, there is a growing evidence base supporting intersectionality – Indigenous women are particularly at risk for both hepatitis C and HIV. For example, 24.7% of the non-Indigenous hepatitis C population in Canada are female whereas 44.5% of the Indigenous hepatitis C population are female – almost double (I-Track, Phase 3). In the Canadian HIV/HCV co-infection cohort, 13% of participants self-identified as Indigenous, with the highest Indigenous rate being found in British Columbia, at 33%. A community-derived research agenda for Indigenous peoples with hepatitis C is essential for improved outcomes.

Methods: Scoping review methodology was employed to ascertain the existing evidence base. Sharing circles, as well as storytelling and narratives, in conjunction with qualitative research methodology, were used to gather data. Participatory evaluation and grounded theory were used to identify key themes. From this, a community-derived research agenda for Indigenous peoples with hepatitis C will emerge and be derived.

Results: INHSU will be the first time preliminary results will be released outside the community.

Conclusion: Indigenous people have much to learn from each other. Canada has the highest known rates and rate differentials for Indigenous peoples with hepatitis C. A community-derived research agenda is essential to address the existing hepatitis C-related health inequity and prevent future cases within our communities. Other countries can learn from Indigenous peoples in Canada, who are unique in their disproportionate burden for hepatitis C, injection drug use and related diseases.

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